What Every MS Patient Should Know About Ocrevus and Its Use

What Every MS Patient Should Know About Ocrevus and Its Use

With the recent approval of Ocrevus (ocrelizumab) for both primary progressive and relapsing multiple sclerosis (MS), interest in the medication is peaking. To help readers of Multiple Sclerosis News Today better understand this new medication and how it works, as well issues dealing with access, use, and potential side effects, here is a summary of the most relevant information now available about Ocrevus.

Comments and concerns expressed by many readers on our different platforms were taken into consideration in writing this article.

The basics

Ocrevus is a prescription medication, so people considering the treatment should discuss with their physicians whether it may be suitable for them.ocrevus

Genentech — Ocrevus’ developer — is working to make sure that patients receive adequate information about the therapy. The company has set up a website — www.ocrevus.com — with detailed information. Patients can also call 1-844-627-3887 (Ocrevus Connects, Monday to Friday, from 9 am to 8 pm ET) with questions concerning this therapy.

The drug is an antibody that acts by depleting a certain immune B-cell — those B-cells carrying a molecule called CD20 on their surfaces, and thought to be involved in the processes that cause brain damage in MS.

Antibodies are proteins, and as such they cannot be administered like a pill. Just like proteins in food, antibodies would be chopped up by the digestive system, and do little good as disease treatment. Ocrevus needs to be administered as an intravenous infusion at a clinic.

Access and pricing

When Ocrevus was approved by the FDA on March 28, Genentech announced it would be available across the U.S. within two weeks (meaning, early April). The list price for one year of treatment, which consists of two annual infusions, is $65,000. At this time, Multiple Sclerosis News Today has no information about how the drug will be reimbursed.

Genentech is trying to make sure that all eligible patients can access the treatment. The company’s Access Solutions program is designed to help patients who are prescribed Ocrevus navigate the access and reimbursement process.

This program assists patients in several ways. First, it helps in finding out if a patient’s health insurance plan covers Ocrevus. It also allows patients to estimate out-of-pocket costs for the treatment.

Second, for patients who lack health insurance or cannot afford out-of-pocket costs, Access Solutions provides financial assistance options that could help these people cover the cost of treatment.

Finally, Genentech works closely with pharmacies and clinics to make treatment available in places where patients live.

In addition to the website — hwww.genentech-access.com/patient/brands/ocrevus.html —  Access Solutions can be reached by phone at 866-422-2377.

The procedure

As mentioned, Ocrevus is given by an intravenous infusion.

Before beginning treatment, patients are tested for the presence of active Hepatitis B infection. People with Hepatitis B infection should not be treated with Ocrevus. If a patient has another type of infection, doctors wait with providing the medicine until the patient has recovered.

Since the drug interferes with the processes leading to the creation of an immune memory response, vaccinations with live-attenuated or live vaccines need to be given at least six weeks before the start of Ocrevus treatment.

Like other biological drugs administered by infusion, Ocrevus can give rise to infusion-related reactions. To minimize this risk, pre-treatment with methylprednisolone or another corticosteroid is recommended. This pre-treatment is given as an intravenous injection about half an hour before the infusion.

The risk of infusion-related side effects can be further minimized by taking an antihistamine between 30 and 60 minutes before the Ocrevus infusion. Adding a fever-reducing drug, such as acetaminophen, can also be considered.

Ocrevus is given every six months. The initial treatment is administered in two sessions, two weeks apart. At each of these sessions, the patient receives 300 mg of Ocrevus over an at least 2.5-hour infusion time.

All following infusions are given as a single 600 mg infusion, lasting for at least three hours, every six months. If a patient has an ongoing infection, this treatment will be delayed until recovery, and the next dose is then rescheduled for six months after the last.

After the infusion, doctors are advised to monitor a patient for at least one hour, checking for side effects linked to the infusion procedure.

Is Ocrevus for everyone?

Each MS patient considering Ocrevus treatment should discuss with a physician if the treatment is a suitable option, as there are certain groups of patients who should not take the medication.

People who have been infected with the Hepatitis B virus should not receive Ocrevus. In specific cases, a liver disease expert may be consulted to consider if an exception is possible.

People who have had an allergic reaction to ocrelizumab, or to any of the components in the infusion solution, should not take Ocrevus.

Pregnancy and breastfeeding

Women of childbearing age may wonder if it is possible to use Ocrevus during pregnancy. Ocrevus has not been studied in pregnant women, but when given to pregnant monkeys in preclinical studies, the drug did cause toxic effects in fetuses without harming the mother.

Ocrevus depleted B-cells in these fetuses, with some dying of bacterial infections upon birth. Researchers also observed kidney damage, abnormal lymph structures in the bone marrow, and reduced testicular weight.

Data on other drugs that also deplete this type of B-cell reported that human babies born to treated mothers temporarily showed “transient” reductions in B-cell and white blood cell counts at birth.

Women of childbearing age are advised to use adequate contraception while being treated with Ocrevus.

Animal data also showed that Ocrevus passes into breast milk. For women wishing to breastfeed, the health benefits a baby receives from breastfeeding need to be weighed against the mother’s need for Ocrevus treatment and potential risks to the infant.

Side effects

Ocrevus is considered a relatively safe medication. That does not mean that it is free of side effects.

Infusion-related reactions

Among the most common side effects are those related to the infusion. Even though pre-medication can reduce the risk of such reactions, or make them less severe, it does not eliminate that risk.

In the clinical trials leading up to Ocrevus’ approval, 34% to 40% of patients experienced infusion reactions. They are, however, most likely to appear after the first infusion, with the risk dropping with subsequent administrations. Although doctors should monitor their patients during, and one hour after, the infusion, these reactions can occur up to 24 hours after the treatment.

Symptoms include skin itching, rash and reddening, difficulties breathing, and throat irritation or swelling, flushing, blood pressure drops, fever, fatigue, headache, dizziness, nausea, and a racing heartbeat.

Most of these reactions are mild to moderate, but 0.3% of patients in the trials experienced severe side effects linked to the infusion.


During the trials, Ocrevus was linked to a higher risk of developing airway, skin, and herpes infections.

Most airway infections were mild or moderate, and were mostly common colds or bronchitis. Herpes infections included shingles as well as oral and genital herpes.

During the clinical studies, more patients in the Ocrevus treated groups developed cancer. These numbers were low — making up 0.5% of all patients in the two trials of relapsing MS, and 2.3% in the trial of primary progressive MS.

Genentech recommends that patients who receive Ocrevus adhere to routine breast cancer screening, based on a patient’s age and family history of cancer.

Progressive Multifocal Leukoencephalopathy (PML)

Other MS treatments have been linked to the development of PML, an infection caused by the John Cunningham virus. This is a condition that most often leads to death or severe disability.

So far, there has been no case of PML among Ocrevus-treated patients. Since the infection has been seen in people treated with similar, B-cell depleting drugs, however, there is no guarantee exists Ocrevus does not cause PML.

Immunocompromised patients — including those combining a disease-modifying treatment with immunosuppressant drugs — are particularly at risk.

Magnetic resonance imaging (MRI) brain scans often detect signs of PML before symptoms appear. Symptoms can vary, but often include progressive weakness on one side of the body, clumsiness, vision problems, and changes in thinking, memory, and orientation leading to confusion and personality changes. These symptoms can developing over days or weeks.

At the first indication of PML, patients need to contact their physician, and withhold any further infusions.

Many patients might wonder if switching to Ocrevus from their current medication would be beneficial. Since each patient, and her or his disease, is different, it is crucial for patients to discuss any changes in treatment with a physician.

The full prescribing information on Ocrevus can be found by clicking this link.

Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.
Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.
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  1. Paul kuyp says:

    65,000$’s per year! What’s the point? How are we supposed to afford that when most are on disability? What a waste of time & research!

    • Brian says:

      They are going to have $0 co-pay programs and foundations available. The nice thing is that Ocrevus is for RRMS also so those who are still working and have medical insurance other then medicare, ss, and medicaid will help us who can’t work and have no private insurance. It isn’t remyelination but I personally think it is better to target these B cells then wiping out my white-blood cells like Tecfidera is doing.

      • Loreal says:

        My insurance has agreed to pay 100 percent, but this treatment scares the hell out of me. They couldn’t conclusively diagnose me and I’m not on any meds, as such I question the risks.. Any thoughts?

          • Teri says:

            How about the fact that this drug depletes all of your white cells and you have nothing to fight infection? I need surgery but can’t proceed because I have had three treatments and my wbc is 4? How do you support that?

          • Alison says:

            I just did my first half dose. I feel like a truck hit me but still think best thing to try. Good luck.

          • Trinette Nichols says:

            I just got diagnosed with MS and I am afraid of the unknown! I’m a very outgoing person and to think of being in the hospital receiving this medicine through IV is scary let along to hear you say that the medicine made you feel like a truck hit you… how long did that last and how long did it take before you start feeling better?

          • Darnell johnson says:

            I’m suppose
            to on it to my doc is trying this after rebif didn’t work copax was uncomfortable lumps every time I did my injection

          • Deborah says:

            I have had my first doses…. no side effects… not even panadol afterwards. The greatest fear is the unknown. I am still working fulltime and out funding is certainly different here.

          • Kathi says:

            Trinette, your doctor would be irresponsible to put you on this medication as your your first DMD. You should be in one of the orals, copaxone or an interferon. Personally from experience…Rebif, because it is taken 3 times a week is a great starter interferon because it can help you calibrate your dose. I was on 3 DMDs before I went to Tysabri. I have been JC+ from the start. Was on it for 5 years before my doc said I could not have it anymore. That’s why I am changing MS specialized neurologists.

            He did not explain the risks involved with B cell depletion. Your body can’t fight any infection with B cell depletion, whether it be a UTI or pneumonia. (Both common with MS). You could die before your body would have the ability to fight on this medication. I don’t want to scare you, but demand that the neurologist discuss the importance of B cells to your body and what happens when they are completely eliminated.

          • PAUL says:

            Hi I hear you,
            I had MS since I was 21 but now im 47 . before taking this drug I was sure tomorrow was going to be worse than today – not a good thought to have every day yeah . I did take it after refusing treatment for 10 years and it has made a dramatic difference in my life. I used to bounce around the house like a pin ball leaning on walls for support but not now , I walked around the block with my kids which I have never done before but the only problem is now that I need to go to the gym and build up my muscles since not using them for a long time they have shrunk – this I can do. Everything has improved , I sort of feel like I got a second chance. Give it a go, regards,

          • Lora says:

            You have to be strong for him as his care partner. I have been taking it for going on two years. No issues. Would be ALOT worse without it! I have tried everything.

        • Dakota says:

          I just started it – and I am not comfortable with it at all. Especially when finding out politicians had their hands in making money fast tracking it. But it’s this or nothing – rolling the dice.

          • Trinette Nichols says:

            Hi Dakota,
            Are you talking about the medicine itself? How did it make you feel upon completing your treatment?

          • Amy says:

            Yes,Trinette Nichols he has had both infusions 1 and 2 weeks later2. First one he had a rash during the 1st stopped gave him additional benedryland had to stop infusion for half hour then took it yhe drip back down to 90 .He also developed a high heart rate.But he was fine after we left. Second dose they decided to leave at 90 no rash but still had elevated heart rate.But was fine before leaving.He still is still having issues with pain and wearing his glasses bothers him.speech is still slurred from relapse in July.nuse daid it would probably take 12 to 18 weeks to feel the positive effects of the Ocrevus.

          • brad says:

            Forget all the crap I’ve read. When your spouse ends of not being able to walk, stand, urinate, having to induce bowels in bed, wash her, dress her, pills, etc., you’ll try anything to beat this dreaded disease. She’s 69, had her first two infusions, had “0” side effects, and when you ask her how she feels, she’ll say, “I feel GREAT. I just can’t walk.”

          • Bryan Collins says:

            How has your treatment been and did you notice any difference afterwards? I just did my 1st treatment on 4-9-2019 and I really haven’t noticed anything different. Any input would be greatly appreciated. Thanks and have a good day.

          • murray says:

            Because if aggressive, they would. I was given Rituxan first due to severity at onset, or after the massive attack that paralyzed my left side 100%. I don’y really want to switch as Rituxan is working.

          • Crissy says:

            The new belief (backed by research) is that you hit MS hard and don’t play around with the lesser drugs which allow more deterioration. If deterioration can be prevented to begin with then the result is a better quality of life with less dissability.

          • christine says:

            Yes, they told me i had to try 3 other medications, have them fail, and then they approved this. I’m nervous to try it but the others failed so i guess this would be the next best thing.

        • Molly Pitcher says:

          I would get a clear diagnosis. PML and death from side effects, greater risk of cancer,I would want to know definitively that MS was the culprit.
          Once you start messing with the immune system, you can’t go backward. It also would be nice to know what is causitive factor in MS. (first)Treatment of a disease, without knowing what is causing it is like driving a car while wearing a blindfold.
          My brother is presently recieving this treatment, and this scares me to death. He and I BOTH have MS. I got him into a MD to get him diagnosed. They tell me that MS isn’t genetic, but obviously there is an immune sensitivity in both of us. My older sister doesn’t have it.
          Other factors to consider are if you are a single Mom, or have young children. I would be adverse to rocking the boat with my health further.
          Good luck whatever you decide, and I will pray everything works out. Molly RN, RRMS,diagnosed 18 years ago. Still mobile, I do have seizure disorder from a lesion. I have a wonderful helper, a service dog that helps with balance, getting help when needed, and giving a ‘heads up’ when seizure about to hit. My hubby and I made a difficult decision: take anti-seizure meds that left me gorked or not take seizure drugs, be me, take a leap of faith with my service dog (which was the BEST decision)…and I’m still ME. It was very hard to make that decision. I retired from working in the community as an RN in 2004, and worked as a nurse consultant till 2011 when the seizures interfered with work. That was a tough one to decide too. There are many paths in one’s life where the road forks, and you take a leap of faith. God Bless. Molly.

          • Mary-Anne Paul says:

            Hi Molly,

            Glad to hear you have so many support systems! I was curious about the drugs you mentioned that target remyllanation( sp) that are in last phases… what are they called? I just started ocrevus Feb15/18 and not sure that was a good choice . I am not in canada and it was just approved up here. May adk my doctor to put me back on Augagio , which had a lower suppression rate , but worked well for me.

          • Charles Breuninger says:

            Since I was 15 in 1979 and my father was diagnosed with what they called Male/Progressive/Degenerative back then and there were NO drugs or even treatments at that time and I watched him die horribly in 8 years, I too was told over and over again “M.S. IS NOT GENETIC” Well, guess what?! I call B.S. on all of the M.D.’s and PhD’s who think they’re the “experts” on M.S., because I know too many people who have more than one person in their family who have M.S.

            By the way… I’m “living proof” of my theorem. I was told by a doctor 8 years ago when I first started having symptoms that I recognized all too well that I couldn’t have M.S. because I didn’t have hyper-reflexes when he hit my knees with a rubber mallet and that my (very bad at the time) Type II Diabetes was the cause of all of my symptoms. While I was skeptical, he was the “M.D.” and I was just the layman who knew M.S’ worst side. What my doctor didn’t take into account was the severe damage that had been done in a car wreck which first started me using a cane, and then a scooter (or so I thought after I believed this quack) and ultimately a power chair.

            Yep, you guessed it. I have Progressive Multiple Sclerosis. Don’t tell me there’s no genetic component! Both my father and I were State Champion athletes in high school, played our sports into college, led active lives until we couldn’t.

            Luckily, my pain management specialist hooked me up with a really great neurologist who told me when he gave me my final diagnosis just two weeks ago that he had assumed it for the 5 years he had been treating me, and had I not kept skipping out on the tests, and followed up with him more often (I went through a rough divorce) and not had my chest tied together with steel after an open heart surgery 4 years ago, he could have done MRI’s instead of the Lumbar Punctures and other diagnostics that even though they are more clear and more thorough, took much more time for my insurance company to approve and me to actually get done.

            Right now I’m awaiting the results of my blood test to see if I can get Ocrevus. It will be my first “M.S. Drug”, however like I stated above, both my neurologist and I have suspected for years that I had this dreaded disease. I’m just very blessed to live in an era where at least I’ve been taking drugs that help with the symptoms for years already.

          • Barbara says:

            Hello-my name is Barbara and I was diagnosed with juvenile onset MS-at 29 years old. I am now 42. I have absolutely NO FAMILY HISTORY of MS or any other autoimmune diseases for that matter. (I was also diagnosed with a very rare autoimmune vasculitis in 2010…again, no family history anywhere)! I know several researchers for this disease and they believe that MS is caused by a virus that turns on a latent gene-that is probably in most-if not all human beings on the planet. Ocrevus will be the TENTH medication that I will try to try and fight this really unfair disease. I would rather try to fight with every weapon available in the arsenal than let the disease win. MS has sent volley after volley, attacking my CNS with ruthless indifference to the dreams and plans I have built my life around. We all have to do what is best for us on an individual basis. The only way we can make those decisions is to be as informed as we possibly can. I cannot stress the importance of knowledge when it comes to this disease and any and all medication one decides to put into their body. I cannot tell you how many patients I have witnessed not know even the basics and who blindly follow what a doctor tells them. Doctors are HUMAN-NOT GODS!!! Medicine is as much an art as it is a science. Like any profession, there are folks who are naturally, very gifted in certain areas-and those who are not. Physicians are not exempt from this. Just because one worked very hard at making it through whatever medical school would confer a diploma-it doesn’t mean that they are good at their job or once they begin to do the job-that they even LIKE doing it. When you have suffered with a long term illness, no doubt you have encountered any number of so called health care professionals you wouldn’t trust the care of a gerbil to-yet they are trying to dictate the path your life takes? No. YOU-the patient-is ALWAYS in charge. Please hear me-do not put up with people who are terrible at their jobs! Would you trust a bad mechanic to fix your car? No. Because your life depends on the proper function of your vehicle. Think about that when you choose a doctor. You have the right to ask questions of every single person who comes near you in a medical situation and you do not have to accept any treatment of any kind until the questions you have are answered. Write them down before you go-but you has the right to look out for you! We are our own best advocates. I have only had the first half of the first treatment. I have had a few side effects so far but I am dealing with them in conjunction with my doctor. I am reserving judgment for the time being. I am a vibrant, intelligent, fun, happy, young woman with SO much life ahead. I would rather go down fighting then live imprisioned in a useless body. Good luck to everyone. Do what’s right for YOU. See you in the trenches. Fight on warriors!

          • Sue says:

            Hi Molly,

            Wow,I have the exact situation. My service dog, Hannah a tiny Golden is my Godsend. She also detects seizure activity prior to having one. Ive decreased seizure medication. I believe just having a loving animal plays a huge part of emotional health and as you said Molly, helps with walking steadily. Hannah is also a therapy dog so I visit patients at a Behavioral health facility. The joy I feel seeing her interact with the girls is the best medicine ever. As well as how it changes their emotional health. If this sounds confusing or not pertinent to some,I just wanted to share a way of feeling better has worked for me. Also,she , Hannah, has needs which include exercise. This being so important with MS. Im also beginning Ocrevus infusions. Positive thinking and support from friends and my church help tremendously.

        • Jacques N says:

          Im with you! Ive been on several MS Meds. Ive had MS for a while & my progress is flat. (Tecfifeda gave me a. bad reaction so did Interferon meds.) Copaxone is the only oneI feel is a safe option & I really don’t like the sounds of Ocrevous. If I were you Don’t take if theryre not positive! on diagnosis!! Go to an opthlamogist to check your optic nerve for inflammation & palor ( depigmentation) That was the defining factor after Lumbar puncturrs & MRI’s. I wish you the best!

          • Margaret says:

            My husband is 69 and was diagnosed with PPMS Jan. 5, 2018. He went on 9 days of Solumedrol infusions starting the day of the diagnosis which helped him somewhat and then about 2-3 weeks after the last one of those, he took 1/2 dose of Ocrevus by infusion. Two weeks later, he got his 2nd infusion of Ocrevus. He had no side effects and is doing a lot better than he was.

        • Rosalyn says:

          My husband has had 3 infusions. He has PPMS of 6 years and is in a wheelchair. He has not had a single bad reaction. He feels better initially but he hasn’t noticed any significant benefits. I wish we could have started this before he became so disabled. He is 75. If it were me, I’d try it.

          • Delores L Simpson says:

            My boyfriend is 37 and was recently diagnosed with relapsing remitting and dr wants him to start the OCREVUS, he can still do things but can see it’s starting to take a toll on him. Would you reccomend this treatment

        • Theresa Pekelder says:

          I think if it were me, I would wait to start anything for 3 months, or until the next MRI, and try fruits and vegetables, 0 grain, 0 gluten, chicken or hard boiled eggs for protein, and avacado and fish oil. This is what my Dr has suggested for me. Also, tumeric takes inflammation out. Just something to consider.

          • Tammy says:

            Theresa, I did exactly what you are suggesting. Went full keto after watching therealskinnyonfat dot com produced by Montel Williams. This is a 9 episode docu-series full of health experts. I have lost weight and felt phenomenal. But I still had another MS flare and now show disease progression (more lesions) in my MRI. The doctor explained MS invisible disease that is working behind the scenes with no apparent symptoms and you’re feeling great until BAM one day your dibillitated. All that to say, yes: heal your gut, modify your diet, take control of all the things you can to live as healthfully as possible, get all the information you can. But ALSO treat the MS before it’s too late.

        • jim sperlakis says:

          Loreal, I know this is late but I personally know that it’s Much more important to watch for Any lesions that appear in the brain stem (medula) and C-spine section of the spinal cord than anything in the brain as I have. I’m fighting primary progressive ms and considering Ocrevus instead of another round of Lemtrada.

        • Angela says:

          A spinal tap would give you precise diagnosis although spinal tap really suck. It’s not fun but I wouldnt start treatment unless they knew for sure. Good luck!

          • Louis G. says:

            My spinal tap was no big deal at all. Felt the numbing agent go in and got a small jolt to my left leg when the drain needle went in. Other than that no pain, no headaches, but I made sure to hydrate the hell out of myself the day before and after.

        • Natalie Varvel says:

          I would make sure I get a clear diagnosis before taking any medicine. You can get a spinal tap and MRIs and the doctor will tell you for sure what is going on. I have tried several different medicine and they all have their side effects some work better for others. I was hesitant to try this one to but I am glad I did because I think it gave me more energy. Plus it is one less pill I have to take. This is not an easy journey but you will figure out your way and what works best for you.

        • AMY BUTLER says:

          I can honestly say that there is nothing to be scared off with this treatment. I had my two half infusions six months ago and I have my full infusion next week. Aside from the small amount of side-effects, I am very pleased and I would recommend it. Good luck

        • Christie says:

          If you are not exhibiting most of the MD symptoms I strongly encouraged u to get more test done. The side effects of MS therapies are no joke. My blood pressure dropped so low while I was is my Drs office that as a results I was unconscious most of the day. There are 3 weeks I can’t account for. I was in the hospital for 6 days 4 were in the ICU. There was less than a 5% chance this would happen. We need to take all the side effects seriously no matter what the chance.

        • Benita Dizy says:

          I was supposed to have my second infusion on May 1st. The doctor left and I got the first one split in two parts…2 weeks apart.
          This week I have blood dots on my forearm that arrived out of no where..petchei..that’s what it looks like…overnight I got these purple spots..I am weaker than normal, having headaches and 5 days later my whole body is itching..
          I looked this up and they are getting bigger and round SMALL blue DOYS TODAY…



        • Jayray says:

          I know this is an old post, but I had my 3rd Ocrevus treatment yesterday. The drug has halted the MS progression in its tracks, shrunk my previous lesions and there’s no new disease activity shown on my MRI. I was used to getting mediocre news so when I found that out I was floored. Also, I didn’t have insurance this time around and the company gave it to me for free. I have no side effects or reactions to it at all, except the typical side effects from steroids that they give you with the infusion. It’s a wonder drug, the closest thing to a miracle that I can get right now.
          Good luck to you all 😘

      • David says:

        I agree and just got the call for my participation for this infusion. Yes I’m nervous but my decline is getting worse. I pray for miracles so I will say one for all of us. Great luck with whatever you decide on.

        • Derek says:

          David i was on avonex for a year and a half a weekly injection i went grom using a cane to walker to wheelchair had my 2nd half dose today no side effects 2 weeks ago or today

          • Derek says:

            David i now go back in 6 months hoping to see some improvment with ocrevus and physical therapy stay positive

          • Molly Pitcher says:

            Have you considered the Swank diet? It was used for years before there was even corticosteriods for flares. They had impressive results from it. Also elimination of all sugar from the diet is helpful. It definetely won’t hurt, and could help alot. Molly RN

        • Benita says:


    • Janice says:

      I am on lifetime disability and my insurance in Medicare although I am 50 years old. My plan thru medicare AARP covers all my prescription costs wth the accepting of a couple of dollars. They paid out over 40k last year. I think medicaid would prob pay for it also. If you are on disability I would think you’d be getting one of Mr the other

    • Christie T says:

      I’m on disability and my Medicare insurance has either completely covered my MS meds. The avonex I take now and it runs $52,500 a year. The drug companies also work to help out. They want you to be treated. Don’t make it a pity party for yourself. Enable yourself and do what you need to. This drug is going to help hundreds of people. Think about those that have passed on that didn’t have the opportunity to use these meds to better their lives. It may not be for you but stay positive. No amount of research is a waste of time!!!

      • Mel says:

        Wow, thank you for your well thought out reply. I agree, we are all responsible to be our own advocates and as such, we have to utilize resources available. There are many. I remain a hopeful warrior in the fight against this disease. I am grateful for the support, and the research that goes into every minute of progress to that goal. Stay strong everyone!

      • Molly Pitcher says:

        There are drugs that have passed Phase II testing, and being fast tracked. They regrow myalin even in folks with long-standing lesions like me. Minimal side effects as well. I’m awaiting on them. Seems like a winner. Molly RN

      • Stork says:

        You are so right on. Recently retired after years of issues. Finally diagnosed with PPMS after a spinal tap. So wonderful to finally know what it is and to have a starting point and game plan. I have stayed as active as could these years while awaiting diagnosis. This includes PT, gym (beginning of year), recently began Yoga and it so great. You can’t slow down.

        I only took one Lyrica (75 mg) a day prior to diagnosis. Just began Ampyra (the walking medication). I have been on it for only 2 weeks. And it already has helped in that I have gone from using 2 canes to one and some days can go 2-4 hours any type of assistive device. So important for us to get lots of sleep and to stay inside or limit peak hours of sun activity. So great to know that the MS Association provides MS patients with cooling vests when we just have to be outside and additive walking devices. Also, they have an application which allows you to chart and measure symptoms on a daily basis. It has been a great tool to share with Physical Therapy team. I was so happy to finally learn why I could not “push on through” exhaustion when worked outside.

        I am excited to have taken my first half of first treatment of Ocrevus yesterday. There are wonderful support programs and additional funding programs for both medications; as I believe your or someone else mentioned in this forum. We have to talk to our doctors and most importantly, find the right doctor and treatment team, who truly want to help.

        All I can say is this, the good Lord has brought me answers on His time schedule. Think about this. If I had received a definite diagnosis of PPMS three years ago then treatment for this type of MS not available at that time.

        So many people suffer so much more in this life than those of us with MS.

        Huge relief to know what it is. First time in years that I feel like myself in that I no longer feel like I have a gigantic boulder waiting to drop on my head. Not knowing anything for sure was the worse feeling!

        I have been on this Easter egg hunt for many years but I have found the golden egg. Now I am filling it with treats (appropriate meds, exercise, yoga, etc…) so I can improve my quality of life.

        This journey has included many disappointments but more blessings than I can count.

        Thank you for your post.

    • Christopher says:

      I was diagnosed with Progressive MS this year. I’m very blessed that my insurance plan covers the full cost of the ocrevus treatment for me. I started my first round of infusions yesterday. I wanted to just say thank you to the makers of ocrevus and to my insurance company for fully covering my treatments.

      • Tammie says:

        Hey Christopher this isn’t about Ins I was wondering how you are doing after your first treatment. Mine was the 7th n I’m still real tired n weak.
        I have primary also dx 2005

        • Maria says:

          Hi Tammy you are the 1st person I read who was still tired and weak afterwards. I had my 1st one on the 14th and am really tired and weak then 1 morning I’m fine and then I get hit with it again. Are you still feeling that way?

          • Staci Smith says:

            I am happy to hear that I am not the only patient who is tired and weak after this infusion, I finished my second half infusion and have a headache for going on two months and feel like I have been ran over daily by a big truck

          • Valerie says:

            Hi Maria. I had first dose 10/31 and 11/14. Today still struggle with very tired headache. They tell me it could take up to 3months to feel better. Well I felt better before.

          • Mary-Anne Paul says:

            Hi Maria,

            I just had my first half of 1 st infusion( they break up 1 st infusion into 2 parts in Canada) i just had it done feb15/18 …. it is now feb18/18 and feel horrible, so weak and balance is shot. I had no idea this would happen after the infusion, funny how they did not mention it. Clearly the drug company does not bother to look at feedback on drug forum sites. Every drug comp does not seem to fully disclose sude effects….. that has been my experience so far.

          • L Toles says:

            I am on my second round of Ocrevus and each time I have been out 1 week at work. Day 1-tired, day 2 -4 nausea still tired. Day 6 & 7 drained. Reaction all three times. Not sure who these people are they can go back to work and don’t have any reaction after.

          • Julie says:

            I’m a week after 2nd 300ml infusion and feel tired, week, and foggy. Can’t seem to focus at all!

        • Missy Schlarman says:

          I was just wondering the same thing!!! My first infusion was about the same as yours. I go for the second tomorrow. I feel so week and tired all the time? And nausea?? The best way to describe it is that I feel like I am in my first trimester of pregnancy:(? But that’s not possible!! I was wondering if I was the only one…..

          • BRENDA BLAKE says:

            I’ve had PPMS since October 2008. I had my 2nd infusion June 27. I was tired and weak several hours afterward. I’ve rested today, June 28, and am feeling much better. I’ve had less itching than I had with Techfidera. I’ve been told I will have no out of pocket expense. I have Medicare and Hartford Insurance. Praying everyone will do well on Ocrevus and find it affordable. Did you know why infusions are 6 months apart? “In a clinical study of 51 patients, the Median time for B-cell counts to return to either baseline or LLN {Lower Limit of Normal} was 72 weeks (range 27-175 weeks) after the last OCREVUS infusion.” (Mine is repeated in 24 weeks or 6 months.)

          • Cheryl says:

            I had my first half dose 3 days ago and drove home 3 hrs yesterday. I have a different type headache, being more pareital, than any previously but it is not debilitating. I’ve felt severe fatigue for so long that I can’t truly differentiate the lethargy I feel now from past sx. I’m also concerned about PML but my past medication has stopped being effective and I look forward to the possibility of slowing the progression of my MS. If I suffer a worst possible scenario, I am aware that no one lives forever, and at least my experience may help someone in the future.

          • murray says:

            I was on Rituxan, supposedly switchin, but I still don’t feel 100% with the move. It depleting your Bs, and it will feel that way. I had 4 infusions before I reached zero and 0% CD19 6months after the 4th. That was every 6 months as well, although due to severity, I had 1 then another 2 weeks later, then 6 months 1 and another in 2 weeks, then just one for my 5th, and am switching due in March. I told my MS Neuro that I wasn’t switching, then got blood lab paperwork for Ocrevus and I flipped. I guess I am going to and she says she doesn’t recall our conversation.

          • Mary-Anne Paul says:

            Hi missy ,

            Apparently the drug comp did not feel the need to tell us how we would feel after the infusion.

            I went to this site because i had no clue i would feel this way or what was going on. Would have stayed on my other drug , if i had known it takes 3 months to recover from om infusion.that means 6 months of the year i will feel like crap , by going on this drug. Not sure it is worth it for me. I was functioning just fine before

          • Michelle McPherran says:

            Has anyone suffered chronic deep coughing after having their first infusion of Ocrevus? It doesn’t stop, it doesn’t go away, and is one of the side effects of taking this. It stays with you. Even though you tell your doctor prior to your second infusion you’re experiencing this awful cough, he goes ahead anyway. When you call him to tell him that your ribs feel like they’re broken from all the coughing. He tells you to call 911. When you call him telling him that your gasping for breath, and your heart is beating so fast because of this cough, he tells you to call 911. That was his solution. My sister lived with MS for 30 years. She lived with my mother. On the morning of May 25th it was my mother called who 911 to tell them that my sister had died on her sleep. Her heart had stopped beating after months of her body being wracked by a cough caused by this drug.

          • Alina says:

            Hi Missy! Have gotten diagnos POMS a couple of months before and suggestion from neurologiskt to start with Ocrevus. I’m 59 and still not beliving I have got this kind of decease, stillworking full-tume! How are you now? Would you recommened this medicin?

        • Annie says:

          Hi Tammy…I feel for you and all who are suffering from this terrible disease.My husband has Primary Progressive , was diagnosed a year ago and got worse and worse very fast…he had it his first infusion this week…and had no ill feelings … he has second on the first….we are hoping it does as it says and slows down the progression….we know there is no getting better..but no getting worse is the objective. .best wishes to you.

        • Mary-Anne Paul says:

          Hi ,

          I just had my first infusion Feb 15/18 and feel worse…. ms symptoms are much more apparent ( plus new ones) and it is now only Feb 18/18. Asking my doctor for prednisone, to see if it will help

        • Carrie Batton says:

          I also have PPMS 2016
          I feel tired and weak almost every day, low back pain that is worse when I walk, feel like I’ve been run over by a truck most days, bad balance, chronic pain, chronic fatigue, memory/cognitive issues, and wonder how much worse I will continue to get if I don’t try Ocrevus! After a year of Dr. and insurance trying to get this medicine, I am so excited I will finally be starting my first Ocrevus Infusion on Monday! For those afraid of it…when you are steadily going down hill, you will be willing to take a risk in hopes of stopping the steadily ravishing effects of the PPMS Monster! What I am more afraid of would not be doing something to preserve what quality of life I still have left!

          • Jan says:

            I am going to start with Ocrevus soon. MS veteran since 1983 with no DMD and now PPMS. Waking up every day wondering “what fresh party tricks the monster will play today.”

      • Luz Meneses says:

        It’s been over a month that you received your first infusion. Have you seen any improvement, or any side effects?

        • Jossette says:

          Hey! After being on Tysabri for 5 years..I went to Orcrevus without being on anything 5 months in between!I took my first dose August 14th and my second dose was the 24th! I have been doing good except for the
          sometimes nausea and little short of breath upon my walk yesterday! I was fatigue a day or two after my second dose but today I went to cardio kick boxing and kept up with the young ones on class!

          • Berron says:

            Ty I Bn on Tysabri for 7 yrs An scared to cross over to this new drug but I’m glad u posted feel a little better.

          • Mary-Anne Paul says:

            Thanks for info . Just had my first 1/2 dose of ocrevus Feb 15 and feel worse and its only Feb18 now. No one told me i would feel so tired and symptoms appear to be worse

          • Bridget says:

            I’ve also been on Tysabri for 4 years and am now being asked to change to Ocrevus because I am JCV positive. I’m scared to death because I have been on 3-4 different injectables and a couple of pills that I have had bad reactions to. Tysabri has been the only thing with absolutely no reaction. I can’t afford anymore time off of work and cannot get disability because I still do work. But if I have a severe reaction who is going to take care of my kids and pay my bills? They need to come up with something better and not fast track meds that have this high of a reaction rate.

        • Dakota says:

          The only real thing I can report is I had a pinky toe that had gone paralyzed, and I have some movement again. That’s about it.

          • L Toles says:

            I have taken my third round and when I spoke to my doctor about the side effects she said that I may not notice any changes with pain (actually feels worst) but the real change will be on my MRI no new lesions. Take my first MRI next week I will report back in.

        • Ferra says:

          I’m speaking for my husband. He has his first, second dose the end of August. He done fine with the infusion no headaches or anything but is so tired and weak he can hardly go. He has PPMS.
          I don’t know if he will ever get s medicine that will make him feel a little better

    • Folake Taylor says:

      That’s what I thought too but with the co-pay card from Genentech, my portion is now $5 twice a year. I am partially disabled (work part-time) so I do have health insurance through work that approved it.
      I have PPMS (Primary Progressive MS) and this is the 1st medication approved for PPMS treatment. Got my first infusion 4 days ago. Apart from what feels like a cold in the last 2 days, I’m tolerating it so far. No disabling spasm since the infusion. Excited. It’s not a cure but all month long, I was declining fast. Exacerbating, since I don’t get typical flares.
      I’m so pumped about this medication.

      • Annie says:

        Good to hear. My husband has PPMS as well…had his first infusion 2 days ago…no side affects…also said his creepy crawly feelings in his legs were gone…lets hope it lasts…let me know how its going for you. Best wishes.

    • Brittany says:

      It’s is actually one of the lower MS medications. Most MS medications before any type of insurance or reduction cost between 50k and 70k..

    • Brian says:

      I am now on Betaseron self injection every 48 hrs. The retail cost of 14 injections per mo is $5,154.54 A year supply cost $61,854.48
      If Ocrevus alleviates my symptoms and slows down this damned disease it is worth every penny

      • M Baxley says:

        My sister’s betaseron was costing $107,000.00 per year. Wonder why the difference. She has had her first 2 doses of Orevus and has started seizures and been very ill. I’m worried, doctors all say not related, but I’m not so sure, also having to go to heart Dr. with rapid pulse and low BP. Anyone else experience seizures?

        • Stephanie says:

          I just had my 3rd infusion yesterday – I had a swollen threat for 6 hrs after and now low blood pressure but no seizures – does low blood pressure cause seizures ?? I am very sorry this is happening I hope it doesn’t persist – does this side effect disqualify further infusions ?

    • Deborah says:

      I had my first treatment in June 2017 and the second tx December 28 2017. Upon initial tx I had a bad headache and nausea as well as low energy, tiredness etc… it took me about 3 months to begin to feel better- I began to do light leg exercises and arm weights and felt good for a couple of months. However since the last tx I have had the same issues along with the tiredness I have had more leg/ nerve pain. One night of severe leg, hip and back pain- I will speak to my Doctor today to see what she thinks is going on. Hoping this is a bump that can be over come. I have had issues when I’m over tired with slurred speech and of course foggy brain. The verdict on this drug is still out for me!

      • Mary-Anne Paul says:

        I would be talking to your doctor asap. Their is a chance of PML ( you mentioned foggy brain functioning) PML can be life threatening , it is a brain infection. Hope you are okay

    • Jade says:

      Ocrevus has a program I think called access Solutions that will pay for the medication completely! If you financially cannot afford it. You only need to pay the infusion costs at the infusion center

    • Mike says:

      I am 58 and 3 years ago I had a tight left hamstring which rapidly developed into a PPMS diagnosi. I struggle now walking and use a cane. I was put on Ocrevus 1 year ago and set to do my third installment. Really hard to tell if it’s working since it’s hard to say how fast I was declining. Can’t stop cause I don’t want it to accelerate, and many close to me say I don’t seem to be getting worse. Really like being between a rock and a hard spot. So my question is how long does one continue to get this infusion (my insurance and co-pay assistance covers 100%) can’t see if there is a end to this treatment or if it is forever?

      • Alina says:

        Hi Mike!
        I’m 59 and got diagnos a couple of months ago – Ppms… And neurologist’ suggestion to start with Ocrevus. Still Hard to beleive that it happening to me. Working full-time, afraid to start medicin with a lot of side-effects and afraid to be ome worse… How are you? Your suggestion?

    • Amy Walker says:

      My fiancé just received the first dose of this treatment and has experienced all of the side effects listed. We are going to see his neurologist tomorrow, and he likely won’t be able to finish the treatment.

    • Lisa says:

      I’m on Medicaid, a d disabled, and they completely covered this drug. It’s actually less expensive then some of the other drugs for ms. There is also a patient assistance program worth checking into.

    • E. Frese says:

      Just a heads up… I’m on disability, and just qualified for Medicaid and the drug is covered. Just had my first treatment today!

  2. Kathy deering says:

    Good news for ocrevas. But realistically how do you pay $65,000 for 1 dose 2 doses every 6 months . $260,000 a year. . I realize they have to pay for research but even w insurance how is it possible for anyone to pay this?

    • CORI GRINSTEAD says:

      I read it as $65,000 a year not per dose… cheaper than the Gilenya I’m on now at $6500 a month totaling $78,000 a year. I’m sure they will have a program like the other drug companies to help with copays. Thank God it is finally approved!!!!

      • Kay says:

        I am going to try to this drug but according to my Dr that cost is the drug cost only and there will be additional charges for giving it. there will be help from the drug company hopefully

    • Kim t says:

      I believe you may have misread the article.

      “be available across the U.S. within two weeks (meaning, early April). The list price for one year of treatment, which consists of two annual infusions, is $65,000.”

    • L Jones says:

      The article says two infusions per year costing $65,000. Not each, this would be for both. It’s cheaper than Tecfidera that is around $90,000 per year. The article also said there is an assistance program. Not that I think that these drugs aren’t overly priced, but they do help so many people.

      • Mimi says:

        Im on tecfidera and it is around 55,000 a year. My insurance has 50 copay but I am on 0 copay with Biogen. But it may cost different with different insurances.

    • Debbie Moran says:

      The $65,000 is for the full year (2 infusions). We have applied for help from Genentech and our copay, after insurance is only $5.

    • Missy Schlarman says:

      It is $65,000 per year. And yes that is expensive. But I was on tysabri before and they were billing my insurance aprox $23,000 a month! So for me it’s cheaper:(

    • Michelle Riegel says:

      The 65k covers both, this has been very ins. Approval friendly and the company’s assistance program is excellent

      • Douglas says:

        Please, this is not a forum for taxpayer bitterness. We are all taxpayers and sometimes we don’t always personally reap the benefits but I am sure someone we love does. This may be the first time in my tax paying adult life that I will be calling on my fellow taxpayers for assistance. For that I thank all of you

        • Perle Demenia says:

          I agree with you 100%. Medicare and Medicaid exist to pay for healthcare for those who need it, regardless of the disease. Millions are spent on Neonatal Intensive Care, and end of life care. Millions are spent on chronic diseases. We can’t parse out which diseases and types of care are “appropriate” to be funded by public insurance. That’s a horrible and disgusting thought. Of course you deserve care and treatment. We all do.

  3. Chris says:

    I wouldn’t worry about the cost of the meds. I’ve been on Rebif for a decade and this new drug is actually cheaper. Essentially all of these drug companies offer assistance programs which make the meds affordable. I’ve pretty much never paid a dime for Rebif.

  4. Maz says:

    Can someone please tell me with all the drug company assistance programs what the difference in out of pocket costs for most MS drugs is with the following senerios?
    1. Medicaid?
    2. Private Insurance ie: Blue Cross?
    3. No insurance?

    • Laurel H Plagens says:

      I have BC/Medicare. It cost me $40 a month for my prescription copay. Ocrevus is covered by Major Medical since it is an in hospital treatment. For me 20% copay until I reach my $1700 max. It will be costing my about $800 Out of pocket next week for my first treatment. But then I am done paying for anything the rest of the year.

    • Curtis Juncker says:

      My insurance is a Medicare Advantage plan which has co-insurance copays for tier 5 drugs which Ocrevus is. My Medicare Advantage plan paid $30,250 and my co-insurance portion was $4,250. I applied and receive financial assistance for my portion from a non-for-profit foundation for patients with public insurance. I’ll have to reapply for the co-insurance financial assistance for next year since their funds are limited to the donations they receive each year. I hope this helps.

    • Alicia says:

      As someone who has rrms, I have commercial insurance through my employer, this will be the 4th medication I have been put on in the last 4 years since my diagnosis since I have consistsantly ended up in the hospital every 3 months. I have not once had to pay anything out of pocket for my ms drugs. Including copaxone, gilenya, tysabri the most recent- there are so many co pay assistance programs out there for anyone in Any sort of insurance situation.

  5. Tammy says:

    My husband takes Copaxone. The cost is about $72,000 per year .

    When first diagnosed we had Premera Blue Cross. At that time we paid nothing for Copaxone.

    He currently has Medicare. Our co-pay now is $10 per month. (I’m not sure if Medicaid would be different)

    Shared Solutions is the name of the company who has assisted us with our co-pays.

    Shared Solutions 800-887-8100
    They help with the drug Copaxone. They will ask what type of insurance you have. If you have private insurance they will help you directly. If you have Medicare they will transfer you to a different department. The process was super easy. We use Walgreens specialty pharmacy, it’s all done through the mail. I tell you that because if you pick it up yourself in a pharmacy your co-pays are more.

    To my understanding if you don’t have insurance Shared Solutions won’t pay anything. And I’m not sure if there’s a program that will help without insurance. These programs pay your maximum out-of-pocket and then once your maximum out-of-pocket is paid for then the drug company is receiving 100%. So it’s a win-win for them .

    • Marianne says:

      Shared solutions is owned by Teva (the makers of Copaxone) so it’s not going to help you with Ocrevus. Contact Genentech for their patient assistance program (I’m sure it’s on their website as well).

    • Linda P. says:

      Tammy, You say they WON’T pay anything for people who DO NOT have insurance? If yes, and I did understand that correctly, how does that make sense? My daughter has just been diagnosed, she is 28 and has no insurance. I’ve been paying everything out of pocket so far, but now we’re down to getting a drug treatment plan and the Neurologist isn’t wanting to treat her…..telling us to go to the county hospital and get treatment there through their insurance program – which to qualify for is crazy and limited to the 1st 100 people that qualify each day. (this is in Dallas County)….How can people who can’t afford insurance not get any assistance? I’ve been supporting her because I didn’t feel like she should get on Medicaid as long as I could do it – now that it’s cost prohibited – we’re in a black hole. I feel so helpless to get her treatment. I know God will make a way….I just don’t understand the system.

      • Magdalena Kegel says:

        Hi Linda,
        I’m really sorry to hear about your daughter and the difficulties both of you are going through. Genentech, in similarity to most other Pharmaceutical companies, has a patient access program that helps people who are underinsured or uninsured to get access to treatment. You can see the contact details at the end of the article. Good luck in securing treatment for your daughter.

  6. Janet J. says:

    Thank you for posting such a clear, concise and easy to understand article. I have friend suffering from this disease and your article enabled her to understand the pros and cons of the drug and prepared her for a conversation with her Neurologist.

  7. Rich says:

    I wonder if a person who is considered secondary-progressive qualifies for this treatment (Ocrevus). I am a young 64 year old male. I’ve had MS for 32 years… I’m still on my feet, can walk short distances (using a cane), drive my car, and go to the supermarket. Not much increase in disability over the years, just nasty sensory flare ups, i.e., numbness, vibrating-throbbing legs, etc. The next 10 years of life are crucial…I hope my doctor agrees to prescribe this medication for me.

    • Debbie Moran says:

      My husband is also Secondary Progressive and his first infusion is scheduled for 8/4. You sound like you’re in the same condition as he is. He has no flares, but the nerve damage has continued. We are hoping he sees an improvment!

      • Emily says:

        Wear warm clothes and take warm blanket bc the no will drop and they will be cold
        Plan to take food and plan to sleep off and on. Easy infusion. I feel so much better than I did before but I don’t know exactly why. Strange feeling after 20 years of feeling nothing. Dx rrms and now spms.

    • Judy Pfister says:

      My sisters situation is similar to yours. She has had relapsing remitting MS for 36 years. She has just been told that her MS is now secondary progressive. She has been approved for ocrevus and will get her first infusion in September. For anyone out there who has had an infusion, can you please tell me what she should expect as far as after treatment?

  8. Eva says:

    Has anyone switched to Ocrevus from Tysabri?
    My risk of PML has increased to 1:100 … so I’m considering the switch.
    I’m wondering about the herpes risk … I already have genital herpes … will Ocrevus increase my break outs (I get almost none right now)? Will it be more likely to cause Shingles, since I already have the herpes virus in me?
    So many questions.

    • Missy Schlarman says:

      I switched from Tysabri, my choices were kinda limited because I was approaching the end of time for my tysabri limit. I like the idea of 2 times a year instead of every month. Idk for sure about the herpes. I can tell you that my immune system always sucks and about 6-7 days after infusion I got a yeast infection and a UTI:(. At the same time!!! That wasn’t fun. But I’m gonna stick with it…. for now at least….

  9. Elaine Wells says:

    The cost for Copaxone and Ocrevis seems to be about the same. Thankfully Shared Solutions has helped immensely with the copayment. I’m recently retired and the stress of work itself as well as the rigid schedule that has gone away has helped my recovery from my last relapse. I am interested to read how the transition from Copaxone to Ocrevis has worked for others. I’m thankful the research has paid off for a new and perhaps more effective treatment of MS

    • L Toles says:

      Please don’t switch I came from Copaxone in which I was having flu like reactions after the injections started about six months after the fact then I will switch to Ocrevus and I have not felt as good as I have felt on copaxone. my lesions were actually disappearing off my brain with the copaxone. I have my first MRI after my third infusion next week I’ll come back and update.

  10. Eva says:

    Well I’m going to bite the bullet and switch to Ocrevus. An MS friend raised a question for me though. I’m JCV positive, which is why I stopped Tysabri. Ocrevus lists PML in their information as a possibility. There haven’t been any cases yet. Is it a real risk with Ocrevus? And if so, does the positive JCV still increase the odds? Did they list it just to cover their butts in case a case occur?

    • Magdalena Kegel says:

      Hi Eva, and thank you for raising an important question.
      PML has appeared with other MS drugs, and there have also been cases in patients treated with Rituxan. Rituxan is a drug very similar to Ocrevus — an antibody targeting CD20 on B-cells. Based on this background, researchers suspect that PML might occur. Although, so far, it has not been seen with Ocrevus treatment.

      This information is provided to allow every patient to take a stance based on all information present.

      Therefore, no one can assess your risk of developing PML, and your JC positivity is something I recommend that you discuss with your neurologist.

      Good luck with your new treatment!

      • Francine Grasso says:

        Hello Magdalena ,

        My name is Franny, I have had MS for 17 years and now I had started taking crevus, I don’t think that I have any side effects but I am more fatigued than usual, has that happened to anyone else?

        Please let me know, thank


        • Magdalena Kegel says:

          Hi Franny,
          Fatigue was not among the common side effects reported in the clinical trials, but not all side effects of the drug are known yet. If you do believe the fatigue is caused by Ocrevus, you can report it at to Genentech at 1-888-835-2555 or FDA at 1-800-FDA-1088 or http://www.fda.gov/medwatch.

        • Kristen Swallow says:

          Hi Franny….I started Ocrevus in August….YES! I am fatigued…very fatigued. I hate it but doc is telling me that it will get better at the 3 month mark. I take Adderall for fatigue and that helps but it has its own side effects.

    • Jim says:

      Hi Eva, I have recently tested a high positive for the JCV and according to my Neurologist who is recommending I switch to Ocrevus, while there is a chance of developing PML on it, he tells me his research shows that the chance is considered extremely small, especially compared to Tysabri which is what I have been on for the last 10 years. I’m going to trust him and give the Ocrevus a try.

  11. Judi Stoker says:

    I’m on Medicare (disability) with my husband’s insurance as primary. I just had my first infusion and, with Genentech’s assistance, I paid nothing. I have great hope because Tysabri stopped working for me after 5 years.

    • David says:

      We were told you could not get assistance with the low copays if my husband had any Medicare coverage. Hisis disability and mine is the primary

  12. John Smith says:

    I was diagnosed with PPMS this past December. I am very sensitive to any medication and the potential side effects concern me versus the benefits. This drug essentially has roughly a 75% failure rate for PPMS. I am also having difficulty finding infusion centers. Any advice would be greatly appreciated.

    • Rebecca H says:

      Hi John Smith,
      I hope I am allowed to post this. I have had MS since 2003. I was on Avonex by first year after being diagnosed. I was sick with the flu symptoms that Avonex causes everyday so I went off. I have had 3 flares this past one lasting over 4 months. The dr. now felt I needed to start a treatment. I am very sensitive to medicine (I cannot tolerate steroids), so he put me on Aubagio 14mg. I LOVE IT!! I do not get any side effects & it does not affect my daily life. It does say it may make your hair thin out, but will grow back in, they test your liver to make sure numbers are good, during the first 6 months of treatment (then twice a year after that). They have an assistance program that helps pay what your insurance doesn’t. I do notice numbness once & awhile (which is a side effect), but it comes & goes & does not effect your daily lifestyle. I hope what ever medication you choose works well for each individual reading this!! Do NOT wait to take a treatment!! I wish I would have started the Aubagio years ago, but Avonex scared me away from taking any treatment!! Do not wait & Together we fight!! 🙂

    • Jeff says:

      My wife got her infusion through Coram CVS/Specialty Infusion. We were set up within a few days. Very convenient. You can go to one of their centers or they can do it at your home. Good luck!

  13. Janice Grossman says:

    I will be having my first infusion of Ocrevus on 7/22/17. I was just wondering if anyone can tell me their experience with side effects after the initial two infusions. Also, the people who have completed the infusion, can you tell me if you have any positive results from this procedure.

    • Jerry says:

      Age 62 and only recently diagnosed with MS and am fortunate to have this new drug available.
      I had my second starter infusion a week ago and I have not noticed any side effects at all. With that said, I have not noticed any improvements either. My insurance covered the entire infusion cost.

  14. Kim says:

    My husband is scheduled for 6/27. Be has been taking Aubagio for 2 yrs and has gotten worse. We were told it would halt progression. It has not. Has a time else had similar experience? I’m concerned that his hopes are up for this?drug like it was for Aubagio. He has to use a walker or cane for short distances and a scooter for distance.

    • Laura says:

      Hi Kim,
      I have MS as well as my daughter. She was diagnosed at 21 and was also taking Aubagio. I don’t think it worked at all. Her doctor wanted her to take Gilenya and she finally just switched over. I have been on Gilenya for 6 years but am starting Ocrevus in September. How did your husband make out with his first infusion?

  15. RYAN says:

    I was on tysabri for 2 years, until i was jcv+. Now my neuro recommends Ocrevus. It seems like fatigue is common with ocrevus, but fatigue is common with MS. I am nervous heading into the unknown. ms sucks

    • Lisa says:

      Hi Ryan,
      Have you started Ocrevus? Is it like Tysabri? I’m still JCV – but my Dr thinks switching would improve my quality of life with less days in the hospital getting infusions. I have tried all the other injectsble meds that only made me sick. I love Tysabri and from what I have been reading on this site, I’m scared to change now even more than before.

    • Judy Gallagher says:

      My MS Neuro has MS and he uses Ocrevus, that is all I needed to hear. I have Obamacare insurance, did not even need a Prior Auth, covered 100%. Just had 2nd 1/2 dose today. No bad side effects, a little flushing and mild headache, but, that is it. I am very optimistic about my treatments, I should notice improvements after my first full dose in September.

  16. Brady says:

    I was diagnosed with PPMS last August. Tomorrow 6/28/17 I get the Ocrevus infusion my doctor recently did another set of MRI’s which showed no new liaisons. But my legs feel worse this year. So should I really go through with Ocrevus if I cannot see that my PPMS is not progressing

    • Annie says:

      Hello Brady, my husband, too, has PPMS, and has progressed rapidly. First was a slow walk…then use of a cane, now to the use of a walker. Had his first dose this week…no ill effects..so we can only hope it does what its supposed to and slow this crap down.Best wishes.

  17. Kymberly Hermes says:

    I was told to go in for a hep b lab as it clearly statez if your positive you can not recive this treatment. Well it came back positive but the dr still says to do it. Now im scared my dr doeant really know the risks. Who else do I need to ask about this?

    • Magdalena Kegel says:

      Hi Kimberly,
      You could consult directly with Genentech, the developer of Ocrevus. They have a helpline you can call at 1-844-627-3887.
      The prescription label states that you should consult liver disease experts if your test is not entirely positive. See text below:

      “Prior to initiating OCREVUS, perform Hepatitis B virus (HBV) screening. OCREVUS is contraindicated in
      patients with active HBV confirmed by positive results for HBsAg and anti-HBV tests. For patients who are
      negative for surface antigen [HBsAg] and positive for HB core antibody [HBcAb+] or are carriers of HBV
      [HBsAg+], consult liver disease experts before starting and during treatment.”

  18. Karen Hooper says:

    Can you take Ocrevus if you failed on 2 previous treatments Avonex and Tysabri? I am currently on Lemtrada, 2 months from my 2nd round. So far so good, but just curious if this doesn’t work what my options are. I am also JCV*. Had MS 12.5 years. Also tested positive for Tuberculosis prior to taking Lemtrada (8/16). Did 9 month protocol of INH.
    Thank you.

    • Magdalena Kegel says:

      Hi Karen. I think this is an issue that is best discussed with your Neurologist. We at Multiple Sclerosis News Today are not medical doctors, and are not able to offer specific advice.

  19. Paul says:

    The problem with the cost is that pharma is bleeding the insurance companies and the USA dry. Many not pay a dime with assistance but this is costing the USA and everyone in the US dearly. All drugs should be affordable with or without insurance. The cost of going to the Dr is nothing compared to the treatments you may need now. Many with MS are middle class hard working people. Our DMD’s cost more than many make in a year and we need to stay on them for life. There is something wrong with this!

    • Tim says:

      It cost billions to develop the drug. R&D cost in big pharma like Genentech/Roche reaches almost 10 billions per year. If the drug is as affordable as a regular dinner, there will be no new medicine and patient with diseases (e.g. PPMS) will continue suffering forever.

      Another fact is that the medicine cost 9% of total medical care cost. My personal opinion, the problem of enormous healthy care is partially driven by tight regulation and medical malpractice insurance. Lawyers makes billions from medical lawsuit each year without helping any patients.

      • MIKE M says:

        Ocrevus (by Genentech) just got approved, however Genentech has had Rituxan (essentially identical to Ocrevus) in its arsenal for a couple of decades. Dr’s have been prescribing Rituxan as an “off-label” drug for MS for many years. However Rituxan’s patent is about to expire and Rituxan can become a “generic” drug (no money to be made by Genentech). So Genentech tweaked the formula ever so slightly to give us Ocrevus. Ocrevus = Rituxan but Ocrevus preserves Genentech’s revenue stream. Genentech is nothing more than sleezy drug pusher protecting stockholders investment !!! If Genentech really cared about MS’ers they would have gotten Rituxan approved for MS and made it available at the lower cost, instead of trying to fool everyone with this so-called “NEW DRUG” and charge $65000+ per year.

  20. Dan Jablons says:

    Hi everybody! Thank you all for these helpful comments. My brother was diagnosed with MS, and his neurologist said that while he’s doing well, he does have “subtle progression” of the disease. He’s recommending Ocrevus for my brother, but I worry about these side effects and whether or not the drug is helping people. Seems from what I’ve read above that many are suffering from fatigue. Can any of you who have been taking Ocrevus tell me how you are doing with the drug?

  21. Evan says:

    My wife is having her first Ocrevus infusion tomorrow. She’s done Betaseron, Avonex, Tysabri, Novantron, Solumedrol and Rituxan over a span of almost 30 years. My advice: keep switching. Stay ahead of the antibodies. Don’t be afraid. You have to fight back.

    • ERNIE BENNETT says:


  22. Marney Gentry says:

    My two cents worth: We all have MS. There is no cure right now. I have been told time and time again that all the meds prescribed to us are experimental because each of us are different. So, why do we have to pay anything because Ocrevus is just another experimental drug? Each of us are just the guinea pigs for another experiment.

    • Lori Duarte says:

      I so agree with you Marney! If it doesn’t fix the myelin then we are still with the MS…I believe all these new fixes that of course are experimental are not healers at all. I take what I need to deal with the symptoms only now and feel better than I have in the 16 years since dx. When someone’s MRI shows less lesions on a specific drug then I will look into that-until then, I’m not willing to be Big Pharma’s guinea pig and allow the insurance to continue paying their lobbyist to fill their pockets.

    • Lauren says:

      I have been on the trial for this drug and it will last for another year, so I haven’t had to pay for a thing out of pocket. I do agree that we are all just guinea pigs, especially since with this trial, they are only covering MRIs of the brain, not also of the spine. So what if there’s no activity in my brain, but there is in my spine, but without any physical effect? I’m only 23, I was diagnosed at 14, and this is the fourth drug that I’ve been on. Avonex didn’t do a thing except make me feel like I had the flu for half of the week after the injection, then it was almost time for the next shot. On BetaSeron, I also had to add on monthly prednisone infusions because I was ending up in the hospital with a relapse every three months. Finally, at 17, I was given the approval to try Gilenya. It had just been FDA approved for people 18+. This was a life saver. In the almost four years that I was on it, I was only in the hospital once. Towards the end, my neurologist said that there was disease activity in my brain that wasn’t showing itself physically, which can end up being extremely debilitating. That’s where the trial came in.
      Since I’ve been on this new drug, I haven’t had many issues. I don’t know if my increased fatigue is due to the medicine or because I work 50+ hours a week, go to college full time, and have a hard time falling asleep. I was offered medication for energy, but it said that it was used for the flu and Parkinson’s disease when I looked it up, so I decided not to take it. The only thing that truly bothers me is that my body aches a lot. Far more than it ever used to. That’s actually what brought me to this page tonight. I looked up pain associated with this medicine because I’ve never had my bones hurt in my hands and my shoulders like they do now.

      Has anyone else experienced this?

      • Kristen says:

        Wow! How are you working and going to school with MS and this drug? You are amazing! I got tired just thinking about you! I started this drug in August. I am 57 and have been on everything…last Tysabri, now Ocrevis. Right now the fatigue is major complaint, but I have some of that bone hurt. My back, and elbows….kinda weird. Have you tried Adderall for the fatigue? It helps me with focus and fatigue and there are some studies out there about how it helps MS folks. Keep up the fight!! You are doing great!!!

      • Melissa Wilson says:

        Hi Lauren,
        You are amazing for all of your accomplishments – way to go. I have PPMS and have received my first dose of Ocrevus, administered two weeks apart. I have prominent bone pain in my fingers, toes, tibia, and my forearm. I plan on speaking with my neurologist about it next time I see her. I’m also retaining six pounds of water weight, which I can’t seem to get rid of. Anyone else experiencing that?

      • Laura says:

        Hi Lauren, Like you, I work 50 plus hours per week. I’ve taught middle school physical education for 23 years and I’ve coached cheer, gymnastics and tennis. My problem is the heat in Alabama. I have no AC in my gym and the blacktop is not covered. Optic neuritis has been a problem. I’ve taken Rebif on an assistance program because my insurance denied it. I haven’t had any active leisons in the 6 months on Rebif. After finding out that Ocrevus was covered by my insurance, the 2 yearly infusions sounded wonderful compared to self injecting. My question (in the trial) have you been free of relapse? I’m wondering how many MRIs that you’ve had in the trial? I have 8 spinal cord leisons and so many scattered through the brain that there are too many to count. You said before the trial something showed in your brain activity? Was that PML related? I’m hoping to find someone that has shown some improvement over time… My specialist felt like the Rebif would help me “not get worse faster, but not would not show improvements.” I’m taking a chance switching, about to go for my 2nd 1/2 infusion. I have to do 10 mg. of generic “amphetamine salts” to combat fatigue on school days. It has helped give me energy for sure. Please keep posting how ocrevus works for you. I’m interested in the long term results:)

  23. Janice Grossman says:

    Have had two infuions and will have the next one in 6months. I have experienced terrible burning in my legs and feet a few days after the procedure (both times). After consulting with Genentech and Dr. they think it could possibly be a reaction to the Prednisone infusion that was given before the Ocrevus. Has anyone else experienced this? Thanks for replying.

  24. ERNIE BENNETT says:

    MY wife was diagnosed with MS about 8 years ago, and has been on copaxone since. I feel that she has been doing very well, and if you didn’t know it, you wouldn’t know it. She is bothered by the daily injections; but she looks great and you can’t tell a thing.She doesn’t like needles. she even works a part time job about 20-25 hours a week, and even stands for periods of time. Her supervisors don’t even know, and can’t tell. She came home today with notice that she going to ocrevus. I am not thrilled because of the side effects I am hearing of, especially since I have seen none after these years of copaxone. I’m just happy that the copaxone seems to do the job, so I am researching starting today into ocrevus. I just don’t think that everything is for everybody, and especially since she has hardly any complaints about the effectiveness. I’m trying not to be to critical; but why change the horse in the middle of the stream just to change it?

  25. Cindy McCarty says:

    I had my first infusion on June 26th and the second on Kult 10th. I’ve been experiencing extreme fatigue, dizziness and naseau since then. It’s frustrating to say the least.

  26. Joe Gendusa says:

    I’ve had MS for 16 years. My doctor wants me to try ocrevus because nothing else has helped. I’ve tried copaxzone, ampra, plasmapheresis and another self injection drug that I can’t remember the name.
    I appreciate all the comments with the treatment results as I am very concerned with the increase in fatigue of ocrevus. It seems like when I’m fatigued for more than 3 days I tend to get a low grade fever and can’t hardly get up to go to the bathroom. I haven’t made a decision yet but please continue on posting your individual experiences with the treatments.
    Try to find a way to enjoy life and don’t just live the life you have.

  27. Brenda says:

    My 39 year old daughter developed MS at the age of 15. She was diagnosed at 19 and has been wheelchair bound for 16 years. After trying so many different meds., she started Ocrevus 2 days ago. It made her very fatigued and she finally woke up this morn., after 36 hours of sleep.

  28. AD says:

    I was diagnosed with PPMS December 2016(52). I had my first Ocrevus infusion 8/4/17. I am very fatigued and am experiencing mild nausea. The only real benefit I felt was from the steroid which improved my gait dramatically for the first 36 hours. 95 percent of my pain went away but is slowly creeping back. I know steroids are not the answer but has anyone else experienced this “pop” with the steroid given before the infusion?

    • Matt Morris says:

      I’ve had MS for 13 years. Had my first two infusions of Ocrevus about four weeks ago. Only side effect is more fatigue than usual. I haven’t noticed any improvements yet. Thanks – Matt

    • Kristen says:

      Yes! Same happened to me with first infusion. I was like Wow! this stuff is great, but now after second infusion, I am whipped. My doc says it will get better at the 3 month mark. Then on to the second infusion.

    • Annie says:

      My husband had his first dose…not sure of his gait being any better…but the creepy crawly fellings that endured every day all day long was and is still gone…could it be the stetoid???

    • Sue says:

      Yes! I noticed the same improvement from the prednisone. It was nice to walk effortlessly for a couple of days. I had my first Ocrevus infusions in July and, except for an itchy scalp during the infusion, have had no other side effects.

  29. Helen Schneiderman says:

    I have my first infusion tomorrow and I’m very concerned that people with MS have reported symptoms of fatigue and generalized pain. I have had primary progressive MS for 41 years; diagnosed at 19. is there anyone out there who feels better after having had these treatments.? I’m rather frightened for tomorrow

  30. Kate Nelson says:

    My daughter was diagnosed 2 years ago when she turned 14. She has been on 3 injectable & 1 oral treatment but the MS keeps marching on. Her neurologist wants her on Tysabri but she is jcv+ and I put the brakes on it. I know doctors may be annoyed with me, but too bad. Any suggestions about what infusion would be best? I’ve been reading about Lemtrada, Tysabri, Novantrone, & Ocrevus and think maybe Ocrevus is a better choice (not that I like any of them) any thoughts??

    • Gary says:

      Hello Kate,
      I was on Tysabri JCV+ for almost 6 years and it worked amazingly well. The infusions are well tolerated and can be spaced out 4-5 weeks by the Dr. I just had my 2nd infusion of ocrevus and it was better than the first one but it does cause pretty substantial fatigue for about 2 days and then still a bit after that for me. Regardless, you should get your child on one of these as the damage from MS is not reversible.

  31. Lyn says:

    I have had MS )progressive form, never RR, for 32 years. For folks like me there were no real disease modifying drug options so Ocrevus is a big deal to us. I am in a wheelchair and since it has been so long, am developing breathing issues and increased swallowing problems in addition to frequent infections due to poor bladder and diaphram function. For me, Ocrevus is a no brainer. Each person must make their own informed decision with doc’s help. I have had my first 2 infusions. Slight minimal rash but they upped the drugs given for allergic reactions, it went away and they continued the infusion without incident. My only problem outside of increased fatigue, was high blood pressure. But I already have hypertension that is very sensitive to Solumedrol (which they give you during infusion to prevent allergic reaction). It was not due to the actual Ocrevus. The Benedryl, also given to avoid allergic reaction will make you temporarily drowsy. I definitely feel excessively exhausted still after two weeks of finishing treatment, but I’m in pretty bad shape to start off with. Have a younger friend with RRMS who is younger and not as bad shape, and he had his first treatment without any problem but brief headache. My infusion center at a hospital was very good and I felt very confident that they could handle any of my complications. Remember that trials were done on mostly younger patients, RR and Progressive so my reactions are likely related to my age and severity of disease going into it. i was told that if I was to see improvement it wouldn’t likely be for a year. Good luck to all.

  32. Celia says:

    I was in the trial for Ocrelizumab/Ocrevus, so I have been taking the drug for six years. I have Primary Progressive MS. When the trial results were finally unblinded, my MRIs showed no disease progress in my brain over that time–a huge relief! I knew I was not on placebo because I had a severe allergic reaction to the first infusion. However, over time the reaction diminished and now I don’t react to it at all. It does create fatigue for a couple of days, but you bounce back pretty quickly. (I’m 50, so not a young person). And it is only every six months, so you don’t have to endure it often. I’m very pleased to think that I have slowed the progress of this disease by taking Ocrevus and hope that it bodes well for the future, until they can re-myelinate and get rid of MS forever.

    • Kristen says:

      Hi…Im a 57 yr old woman…Started Ocrevis in August….am super fatigued…and have some increased sweating. Does the fatigue go away with time?

    • Laura says:

      I’m hopeful after reading this! I just switched from self-injecting to Ocrevus. I’m about to go for my second 1/2 dose (week 2) then May will be my 6 month 2nd dose.. I am a 46 year old p.e. teacher. I’m hoping for the best!

  33. Bryant says:

    New to MS Just diagnosed on the 26th. Not your typical subject. 65 year old male. I have been given three choices for treatment. Ocrevus, Gilenya, and Tysabri. any suggestions from those familiar with the different drugs???

  34. Yvonne says:

    I an starting on Ocrevus 10/01/17. I was diagnosed in November of 1991. Since then I have tried: Beta Seron 1a and 1b, Avenox, Copaxone 20 mg daily, Soulumedrol 5 day sessions three to four times a year for fifteen years, Tecfidera, Aubagio, Copaxone 40 mg. 3X a week, Tysabri (twice) for a total of 45 treatments.
    In the last eight months I’ve had a Heart Attack (2 Stents) and a Stroke, but I’m still here fighting. No matter how I’m feeling, if something needs to get done, it will get done.
    I’m just hopeful Ocrevus will decrease my pain and hopefully help me walk unassisted.

  35. Jay says:

    Thanks for all of the insight here. I was diagnosed with RR in March and have my first Ocrevus infusion 10/9. I’ll be sure to post back about my feedback. Everyone Take Care and Breathe..

  36. BM says:

    I was just diagnosed with MS, but told which kind. I am going to start this … and .. reading all these comments puts me off getting treatment period. I’m still trying to wrap my head around this. I am 29. Want to have kids. Get married. Enjoy life… what’s happening!

    • Maureen says:

      Hi BM,
      I want to have kiddos too! I was diagnosed 4.5 tears ago. My neurologist just recommended that I switch to Ocrevus from Gilynia bc he found a new lesion. Just finished 3 days of steroids yesterday & need to determine next steps.

      The research on Ocrevus doesn’t really look good for babies. I’ve been considering going off meds (I know meds are good, but I want a healthy baby!), practicing mindfulness (less stress) & getting more frequent mri until I have children. Not sure if my neurologist will agree with that plan though. I can follow up with what we decide. It’s scary, but we can do it!

  37. Dustin says:

    BM. Its a lot to get your head around. Youre not alone. Its not a disease you likely knew anything about before you were diagnosed. And a quiet doomsday sort of thing. But- good news is you can manage, and if you look, theres a lot of people out there to talk to. Try to stay off the internet, as much as possible, with regard to over-reading every scary story. You will live a happy, normal life.

    • Trinette Nichols says:

      You are totally correct… I was recently diagnosed on September 5,[email protected]:00pm with MS. I have read some horrific stories that were totally negative about MS. I do understand that each and every person diagnosed with MS has a different journey dealing with this disease, some experience it at a more drastic level than others. I been trying to find a support group in my area but I haven’t had any luck yet…
      I had my first infusion today 10/18/[email protected]:00am. I did have a reaction to Ocrevus leaving my nurse to stop the treatment and give me benedryl to ward off the reaction… I had to wait about an hour before my nurse Angela could start my treatment again… finally the treatment was over and I’ll see her again in two weeks…
      I have read where people say their life is not a happy life living with MS form social media …I totally understand that we have to make some life adjustments in order to move forward..
      I was dealing with pain in my right eye, headaches, dizziness, blurry vision and the inability to hold a cup in my right hand. When I arrived home my vision was clear, thank GOD… but I did experience pain in my left leg and feeling a little weak after treatment but overall I’m trying to stay positive and not read anything that is negative about MS in order to maintain the best possible lifestyle living with MS… I pray that this will be an encouragement to someone else…

  38. Carmen says:

    My doctor is saying I have MS and the kind I have there is no medication for it! He said it is the kind that gradually gets worse, is this progressive MS? And if so why didn’t he tell me about this medication? Im on Medicare and Bluecross with Humana prescription ins. will it cover. Im really trying to work but can hardly walk, just keep pushing myself.

    • Magdalena Kegel says:

      Hi Carmen,
      It sound as if your doctor is talking about progressive MS, but I would really encourage you to ask him/her to give you more information. There are two types of progressive MS — primary progressive and secondary progressive, that follows after years of a relapsing course of the disease. Ocrevus is approved for people with primary progressive MS and people with secondary progressive MS who still experience relapses. You can read more about these types of disease and about Ocrevus at MS News Today. Maybe your doctor does not know about Ocrevus, which was approved in March this year.

      • Hello I am so glad you have mentioned SPMS. I have SPMS with no relapse in three years and no new or active lesions. My neur still wants to to start OCREVUS. I walk every day,do water therapy and have had no new symptoms for 3years. The thing that is the worst for me is extremely painful muscle spasms I received Botox injection and take 3 pain pills a day the Botox has really been a mircial for me. I would like to have your opinion on my circumstances. I have had Ms for 15 years confirmed and 20 years before confirmed. 64 years old. Thank you Brenda Staples

  39. Mary says:

    My sister has MS and she is 59. She will be starting her first Ocrecus infusion in two months. I am really nervous for her because she lives alone. I plan to go with her to the clinic. She uses a walker and is pretty much home bound. Her main sympton right now is dementia or short term memory loss. It is pretty significant. I don’t think this is that common in MS so I am hoping the Ocrevus might help alleviate this too although maybe that is wishful thinking. Has any experienced cognitive improvement with this drug?

      • Michael says:

        I’m Mike I’m 31 did my Ocravus infusion today for my third dose so I’ve been on it a year and a half this will ask me to my 2-year mark being diagnosed I got diagnosed on my 30th birthday hell of a wake-up I was out of work for 8 months the only thing that was wrong with me was back pain and blind in my left eye from the optic neuritis I’m a smoker as well I did not give it up I did cut down I started vaping I’m just worried what it’s depleting and if I need it and maybe it shouldn’t be depleting whatever it’s the pleading certain B cells but I feel good I work everyday well 5 days a week well 6 sometimes if I’m hungry. I gave it a shot cuz I got nothing to lose being diagnosed was a real eye-opener for me I figured what do I have to lose I don’t want to shot every two weeks or every week or every day I want least amount of upkeep there is I suggest everyone here to try it. I was allergic at first they did what they had to do my throat felt a little itchy today as well but it’ll be fine tomorrow that’s not wishful thinking that’s the truth or I can always try stem cell therapy but I hear that’s pretty expensive so $32,500 is pretty good. I was o. Techfidera that was $3,700 a mintg for 30 days 2 pills a day . An you beetter remember to take it. Good luck every one an remember T thia point . WE HAVE NOTHING to loose !

  40. Candie J. says:

    This was only my first half dose, and I feel great! Before (4 days ago) I was quickly losing the ability to walk and was almost ready to use a scooter for mobility, but received this medication 3 days ago. Today I am walking unassisted, my legs have not spasmed and do not feel exhausted like they did. If I had to guess I’d say this medication took my disease back about a year, and what a huge difference it is! Thank you!!!!

  41. Nervous says:

    I’ve been on Tysabri for going on 2 years. My Dr tells me the risk for PML goes up after 2 years and I need to make a choice. He recommends Ocravis but I’m REALLY nervous about this. I want to have a baby and it seems like once you start this treatment it’s game over for getting pregnant. I also may have RA and that looks like it could be an issue too. I admit the monthy infusions can be a real pain but feel very healthy. Is the risk of PML that bad? Is ocravis that good, even for someone that can still function really well? I just don’t know what to do.

    • Lisa says:

      Do your own research. Yes your PML risk goes up but that’s is why they are watching you (JCV blood tests & MRIs) I have been in Tysabri for almost 10 years now. With all the positive experices I have had and how I feel I wouldn’t change.

  42. Tara says:

    Hi, I work in a provider’s office and we infuse Tysabri and Ocrevus. Does anyone have any insight as to why Indiana Medicaid is not covering Ocrevus effective 10/1/2017? This is very odd and we have been trying to find answers here for around 2 months with no success. We are working with our rep. from Genentech along with our rep. for Medicaid and no one can seem to come up with any answers. Just taking a chance here .. Thanks!

  43. avi says:

    Just Had my first infusion, absolutely no problem at all.
    Although due to benedryl I was having a feeling of being drunk, other than that nothing bothered me.
    I took my laptop, worked for 4-5 hours while drip was on and got home drying by myself.

  44. Jack Bingaman says:

    I was recently diagnosed with PPMS up/down from RRMS.
    My Neurologist recommended Ocrevus. Had my 1st 300 bag 12/12/17. Had no side effects except being tired which my wife and I attributed it to the Benadryl. Slept most the time during infusion. Now I have had Leg pain in my left leg for the past year or so, but the following day after my 1st infusion, my leg pain was gone. I can do my steps at night without the help of the hand rail. It almost seems like it’s a 3in1 oil lubricant for my body. Have my next Infusion scheduled for 12/27/17. Hope this helps the people that are cautious about the drug.

    • Sarah says:

      Jack, so promising to hear about the effects from your first infusion. How did the second one go? Any bad side effects? I just met with my Neuro and she wants to switch me from Copaxone to Ocrevus. I’m excited yet nervous about the transition.

  45. Aeriel Landeck says:

    I was just diagnosed with PPMS in early December. By the time I received diagnosis, my right arm and leg were completely numb, I was unable to walk for nearly month, very unsteady, easily confused during simple conversation with my husband, was wearing an eye patch for three weeks because I had such bad double vision. I had my first infusion on 12/15/17. I kid you not, two days later, I wasn’t wearing an eye patch, I was walking around my house with no help my walker or husband. The numbness was completely gone, I was feeling like myself again. I just had my second of the two today (12/29), and I am so thankful for this drug. It has changed my life just as quickly as MS did.

    • Kemm Cameron says:

      Aeriel, Thank you for sharing your story. I was diagnosed in Nov 2017. I have trouble walking as well and I have to walk slow and steady. I get confused easily, vision, numbness, list goes on… I am so encouraged by your experience. I hope and pray I will feel a difference too. Thank You.

  46. D Johnson says:

    I had my first infusion 15 Dec. My 2nd 1/2 dose was to be 3 Jan but no medication was received. Earliest reschedule is 16 Jan, Will the month between the first two half doses have any adverse impact?

  47. Jessica says:

    I was diagnosed with RRMS in May 2017, started the Ocrevus trial in July 2017. I am 29 with two young kids. I work 40+ hours a week with half on my feet for hours. I have nerve pain in my right leg and arm. I just had my 2nd dose (1st full dose) of Ocrevus. I was fatigued for two days. I have had no reactions to this medication. I also have not had any changes in the lesions in my brain. I have not noticed any change in my nerve pain or the tingling sensations. There are however so many different factors that can cause flare ups or relapses. Stress, lack of sleep, diet, etc. MS effects everyone differently so it may be difficult to compare.

  48. Gina says:

    Hi- I just finished my second infusion last week. After first infusion I had a ton of energy the first 3 days then hit a brick wall for about 4 days. Really tired and a slight headache now and then. This time, I had No side effects! I have a ton of energy and I feel great. Really liking Ocrevus and hope my MRIs improve!

  49. Sheila Murphy says:

    I have had 2 doses of this and do not see any improvement. Went to tne doctor today and did say there are no new lesions. I was sick after the first dose but not any more. The doctor said the medicine is working as it suppose to so that is all we can hope for.

  50. Kemm Cameron says:

    I was recently diagnosed with PPMS. It was the answer to what I had been going through. I took a fall crossing a street and cut my knee and scraped leg pretty bad.I wasnt thinking about walking. My leg gave out and down I went, before I even knew what happened. That along with other symptoms Ive had and gone to the Dr for put me on this course. More test, mri’s,found brain and spinal lesions. So now I know what is wrong with me,the fatigue, numbness in feet and legs, poor balance, tremors, vision, bladder. I am still wrapping my head around it. Im scheduled for infusion March 12th, and 26th.I am very nervous how the drug will effect me. After reading many experiences I went back and forth. Do it/don’t do it. I was encouraged by some positive feedback. I cried when I read what Aeriel Landeck wrote… She felt like she got her life back, as quickly as ms took it. I have hope now. Thank you for this site and all who shared on it!

    • Carrie Batton says:

      From everything I have read about Ocrevus, it doesn’t appear to claim to fix or repair MS damage. What it does claim is to slow or stop progression. Diagnosed with PPMS 2016 I was basically told nothing would prevent the disabling effects of PPMS. I wish it had been available when I was first diagnosed with it. I went from just feeling unsteady, just having slight numbness in feet, off/on fatigue and nerve pain, to having to use a cane outside, needing to be pushed in a chair for walking longer periods, to chronic fatigue an pain, feet permanently numb, stiffness, increased cognitive and memory issues…I have been waiting to start Ocrevus for almost a year due to insurance issues and even if I don’t feel better I am just hoping to hang on to what quality of life I still have! I start my first infusion next Monday and can’t wait! For anyone diagnosed with PPMS I would recommend trying it asap to try to prevent permanent disabling progression before it continues to get worse, with hopes that Ocrevus will stop it!

  51. Julie Wood says:

    Today, I had my first full dose of ocrevus. I had the first two 1/2 doses 2 weeks apart, then waited the 6 mo. I love ocrevus. I was diagnosed in 2014. Have been on 2 other meds and then ocrevus was approved so I talked to my doctor and told him I wanted to try it. I do have more energy than I have had on a long time. Only 1 side effect I have experiened. A dull headache for the remainder of the day and usually part/all of next day, then nothing. The only issue I have is not with Ocrevus but my veins. I was poked 4 times today before they got the needle in. My veins tend to roll. The infusion nurse asked me if I have ever thought about a port. I said “no” but I wouldn’t mind that at all. I see my neurologist next week and want to find out his opinion. Does anyone have any insight? Would a port give a sign to my MS and then I start a flare? Just wondering anyone’s thoughts. Thank you for this site. I appreciate everyone talking about it!!

    • Julie Wood,
      I was on Tysabri in the past but due to vein issues like yours,they had to use my hand to do the infusion.Finally,I switched to Tecfidera for 4 years to give my veins a rest.I was also told about the option of getting a port but the chances of getting an infection from having the port with infusions of Tysabri 1 time per month was not worth it.I am now going to be starting on Ocrevous at the end of this month.I can only get blood draws from my hand and infusions in my hand to this day.It was so hard to find a vein in my arm that they even were considering my feet and neck.I of course refused both as well as the port.Ultrasounds to find a vein were not successful either.Im pretty scared to start Ocrevus due to the breast cancer scare mainly.I have more research to do on this therapy though.I was dignosed with MS in 2007 and since then have been on Copaxone to Rebif to Tysabri to Tecfidera.I had a major reaction from Tecfidera after being on it for years! So now, my neurologist feels that Ocrevus is best for me.Please keep me updated on how things go with you since we seem to have similar vein issues.

    • Mal Wattman says:

      Rebif is one of the most commonly used treatments and has proven effectiveness. The FDA requires that a new drug demonstrate that it is more effective than other treatments. It also helps marketing to be able to show that the drug is not only more effective than a placebo but is more effective than a widely used existing drug.
      Some people have difficult side effects with every drug so it is not unusual to find that Ocrevus has also resulted in side effects that are more serious in some people. Those who do not have serious issues are less likely to be posting but you cannot minimize the risks of these drugs. My wife has MS for more than 30 years. Took betaseron when it first came out and was on it for 13 years. She and her neuro decided it was not helping so she quit and has not taken anything since. Doctor now recommending Ocrevus but she is still reluctant.

  52. Anyone else? says:

    Had my first 1/2 of the first dose of Ocrevus seven days ago today. Still have significant head pressure that started five days ago, along with nausea. Has anyone else had similar side effects? If so, did these decrease over time? Thank you.

  53. Todd says:

    I am doing my 2nd infusion tomorrow. I had a few side effects during the initial infusion such as itching and nausea. It was controlled as the nurses in the infusion clinic had direct access to my doc which made it easy to get new orders that was accessible. After I got home I suffered from some hot flashes and nausea for 24 hours. After that it subsided. Praying tomorrow goes well.


    Dr talked me into it. I wasn’t into infusions because of the side effects, but over 11 years on interferons Avonex and Rebif, three different pills (Gilenya, Aubagio and Tecfidera) that caused adverse reactions and all needed to be stopped immediately. My Neuro said I need to go with the Ocrevus infusion. Waiting for the scheduling of my first infusion and reading boards like this to what I can expect. Good luck all in your journeys through the world of MS.

  55. M. Salman says:

    It’s been 5 months now since my first dose… If I knew this will give me that much pain after, I wouldn’t take it from the first place or even thinking of taken it… I am almost becoming disabled. They don’t tell you about the legs side effects.

  56. Jen says:

    I did my first two half doses in August and full dose end of February. With the first two half doses I had a new onset of Migraines, not relieved by medication. Also, saw no relief with previous vision, neuralgia, or muscle spasms! After my full dose I felt like getting out of bed was impossible, the excessive fatigue was combined with intense headaches and shortness of breath. I was diagnosed four years ago, I currently work full time and I’m thankful for insurance. However, I just received my explanation of benefits for the full dose infusion and they charged the insurance over $151,000 for one full dose of just the medication !! I’m praying it is totally covered! My physician put me on Ocrevus, as I reacted to copaxone, and I’m JC positive. I’m at a lost if I want to have another dose! I’m trying to be patient but I missed over a week of work, and felt horrendous for two weeks after that, it’s been two months and I’m still battling symptoms! Thankfully, the shortness of breath resolved after two weeks, definitely the scariest side effect I’ve experienced! Tough decisions ahead, not sure how to proceed!

  57. Alyson Williams says:

    Good afternoon, I would like to know where on earth anyone gets the cost of Ocrevus to be $65,000 a year?? I just had my first two infusions and the drug cost for each one was $98,000. That was a big shock I can tell you, even though I know my insurance is paying for it but seriously -$65,000 WHERE did you get that number from.

  58. Dr. Arthur J Pistey says:

    I have had my first two infusions and had no reactions at all. We will see what the MRI shows in June before my second infusion. I had every side-effect that Tekfidera can produce. The Tekfidera did reduce my inflamed sites from 20 to 2. I can only hope that the Ocrevus does as good a job.

  59. Stacey Baker says:

    I have read many of the comments. I have to say I love Ocrevus. I was diagnosed with MS in 2010, but I am lucky, and it has been very benign. No relapses since diagnosis. I started on Rebif 3 months after diagnosis and spent a couple of years doing those injections. The side affects were not pleasant…achy muscles and flu like symptoms 3 or 4 days out of the week. I them started Tecfidera and spent a couple of years on that. I loved the drug after the initial couple of months…I had to take a couple of months to work up to full dose because the side effects were nasty on the recommended starting schedule. I had to go off of it though because it killed my white blood count. I fell below the range that was considered acceptable while on the drug. My doctor then told me about Ocrevus as soon as she heard about it. I’ve had 2 infusions so far and my third is coming up soon. I had no injection site reaction and no side effects at all. It has been absolutely the best drug that I have tried. I’m sorry it doesn’t seem to work for everyone, but don’t be afraid to try it. I am on the co-pay program, so I pay nothing for the medication.

  60. Troy says:

    Been on Ocrevus for just under 6 months and have no problems what so ever. In Australia it is now covered by Medicare which means we have access to it for $40 per dose. Next dose is just over a month away and have had the flu injection with no adverse side effects as well. Mri has been stable and everything is going really well.
    I must say a big thanks to the Austin hospital, they have an amazing team and have helped me so much.

  61. Kirsten says:

    I’m a 28 year old mother of 4 young boys. I was diagnosed with RRMS May 2015. Tomorrow is my first half dose of Ocrevus, but now I am scared that I made the wrong choice. My MS is considered very aggressive and I have been rediagnosed with PPMS just last fall. I am the only person in my entire family with MS, so I’m not completely sold that ‘MS is geneti as some people are saying. I started out on Copaxone daily injections a week after diagnosis, that wasn’t cutting it so I was switched to Tysabri and I was on that over a year and just recently decided to switch because it was no longer helping. I’m JCV negative and have been from the start, so I mean that is good right? I made the decision to get off the Tysabri because while it was keeping the lesions away, I am still progressing fast. In the past 3 years I have gone from walking unassisted to needing help with balancing and currently to needing a wheelchair. I have tried everything it seems, I take Ampyra for walking twice a day and it helps but I still need a walker a lot. It is so upsetting. But with all the side effects that people have been reporting and feeling awful for weeks, did I just make a huge mistake deciding on this medicine???

  62. Beth Praed says:

    The Ocrevus truly is a miracle drug. After having relapsing remitting for 20 years, I now have progressive MS. A severe MS episode that I experienced two years ago put me in the hospital, rehab and a nursing home for three months. My neurologist then told me that I was dying. But then I was placed on Ocrevus. In the past twenty years since I was diagnosed with MS, I would have 2 to 7 episodes a year. Now for the first time since I was put on Ocrevus, I haven’t had any episodes at all! Never in 20 years has this happened even though I have tried just about everything out there. Nothing really helped much. I will be on Ocrevus for 2 years with my next dose. My symptoms haven’t improved, but the MS doesn’t seem to be attacking me anymore. The disease is silent. This is the next best thing to being cured. I am so grateful.

  63. Tiona says:

    Hello, I am Tiona and I was recently diagnosed with MS last year and I am 17. My doctor recently saw I had new lesions after a year on Tecfidera. I am considering Ocrevus more so due to lack of evidence in regard to PML and the .05% possibility of cancer. I am scared though, is it worth it? I have gained a fear of needles because of this experience and after hearing about new lesions, I am having a very rough time. I would like some advice on this matter.

    • Kerri says:

      Hi Tiona, I have been on Ocrevus for almost 2 years. I have had no new lesions and my scores have came up on all those walking, pushing & pulling test. I tease my doctor that I don’t even have MS but I really didn’t have anything that bothered me with MS to begin with (that I noticed anyway). With any drug there are side effects. The studies I read it’s hard to tell if the cancer was genetic or not. I have another treatment again next week, I’m not afraid of needles so I don’t know how that feels. I have been poked so much in my life. For me this drug is worth it and working so far!

  64. Katherine says:

    I have started Ocrevus this month and have no reactions other than being a bit more tired – I was on Copaxone 40 mg and it failed me (I had a lot of side affects and new brain lesions – I have been taking vitamins (vitamin D3 helps with immune suppression plus womens vitamins for bone health and metabolism I also take biotin for hair skin and nails) I eat a healthy diet and working on getting more rest – I also work full time in healthcare(some research experience as well) and have PPMS- I believe Ocrevus is the right treatment for me -NOONE has had PML associated with this drug- Oh and MS itself is not genetic (less than 5%) but the propensity of having any auto immune disease is actually higher % (such as Lupus , RA etc) I tend to be open minded and hopeful I use a cane and possibly in the next few years I will have a dog -but you know what as long as I am not in a wheel chair I am a happy girl!! Life is hard anyway– try to be positive- surround yourself with supportive happy people and look to beautiful and productive things to occupy your mind – I am thankful that for now I do not suffer and that my medical Team is working hard to keep me from progressing further. Peace to all. XOXO

  65. Yasmin says:

    Hi.. I just had my second dose of ocrevus today.. feeling very tired with headache.. but it’s ok as long as I haven’t got any other aggresive side effects.
    In Jan 2018 I was diagnosed with PPMS and went to Germany for second opinion and it was confirmed!
    It is effecting my left side of my body.. head to toe.
    Looking forward the good effects of ocrevus.. it costs a fortune.

  66. Dan says:

    Regarding Ocrevus for older people, say 60-70 years old: I’ve heard there is a 5 year limit to Ocrevus use for older people. Has anyone heard of this limitation?

    • katherine.tucker says:

      Hi Dan – i just saw your post .. I am 60 yrs old and my neurologist / medical haven’t said anything about a limit on how long I can be on “O”… interesting .. He was actually very excited about changing me to Ocrevus as I had failures with previous meds and new lesions and progression of PPMS..sigh even when we advance we lose something else – it’s the nature of MS ..Even so I should concentrate on the blessings ..Peace XOXO

  67. Layla says:

    I have had the first full dose of Ocrevus and although the day after wasn’t the best of days, since then (June 6) I haven’t experienced any tingling, numbness or twitching….Until now. The muscle spasms are back and the twitching in my left hand is fairly relentless. I was diagnosed in March 2018 with the left hand being the most severe episode for me (lost function-but with OT its much better now). This is the drug my neurologist and I chose due to my desire to NOT have any more episodes. I have RRMS. Can anyone who as RR shed light on the muscle spasms and twitching? Is it normal, should I just get used to it? I take vitamin D daily plus a Dailivite once a week totaling 80,000IUC of vitamin D a week. My levels were extra low.

  68. Just Call Me Lucky says:

    I completed my third in fusion a month ago. For all the paranoia I’ve read here, and some misinformation seen in comments, Ocrevus might not be for everyone but I consider it a blessing that I’m on this treatment. I got to a point where I could no longer take Copacone (too many reasons to list here) and Ocrevus is my bright light at the end of the tunnel.

    I’m a 66 year old male, have had zero issues with the infusions, no observed worsening seen in numerous MRIs I’ve had since starting Ocrevus and I’ll stick with it, despite the fact that it requires a 400 mile round-trip drive for my wife and I and an overnight stay in a hotel in Dallas near the infusion center at UT Southwest.

  69. Ed says:

    I’m thinking of starting the treatment with Ocrevus. I’m a 52 year old male allergic to aspirin. Is there any contraindication for people allergic to aspirin? I didn’t see anything talking about this in their website (Ocrevus). Thank you for your help in advance.

  70. Bob says:

    Here in Wisconsin it’s $115,000 a year.(two treatments)
    Plus, I use Ampera too ($2600 a month)
    The Ampera is for helping you walk better.
    It works for me, but only 30% show improvement.

  71. Folake Taylor, MD, FACP says:

    My 3rd dose is scheduled for next week. It probably won’t happen cos I just developed a dental infection and my lymphocytes came back low. Really, all my WBCs are low. I’m an AA so a little reduction in WBCs is normal. But it’s never been like this. My ANC has been 1.3 for a month and while going on a plane, neuro asked me to wear a mask for extra precautions. Thankfully it’s staying above 1. A month ago, lymphocytes were 1.5. As of yesterday, it’s low at 1. Not sure of cutoff for infusion but the infection already will bump me off till the infection resolved. Scared of missing a dose because I have PPMS and my decline was so fast and disability increasing at an alarming level before Ocrevus. It’s been a lifesaver. I work part-time. I do get more respiratory infections in general though. I don’t mount an immune response like I used to. 2 weeks before my 2nd infusion, I felt like all the Ocrevus had left my body and had the hamstrings tendinitis from hell. I wonder if it’s because the 2nd part of the 1st dose was used to calculate the 6 months and not the 1st partial dose. I hear many people felt like this at 5.5 mo. So, did our bodies treat 5.5 months like 6 months because it was 6 months from the 1st infusion?
    My gluten free diet has greatly cut down on my inflammation. I really want my Ocrevus…😩

  72. Ron Jimenez says:

    I have had MS for 13 years
    I now have SPMS and have tried four different treatments
    Avonex, Tysabri, Rutuxamab and now Ocrevas with very few side effects beside exhaustion
    None of these treatments has slowed down the progression as I am now in a wheelchair with little use of my arms
    I am going to continue Ocrevas hoping to stabilize this terrible disease

  73. Don A says:

    I was diagnosed with PPMS in Feb’09. The earliest symptoms started in 1989 with numbness in my feet.
    I tried copaxone and tecfidera which are designed for RRMS with no effect.
    Started Ocrevus in April 2017 with no side effects and it has helped a lot with the tingling in my right leg. All other symptoms remain. I just received a new brain MRI with no active lesions.
    I don’t know where some of you are getting your pricing from but I have my statement in hand and the pricing of one infusion is:
    $117000 (Ocrevus) + $1248 (clinic costs)= $118248. After insurance I owe $6486.12 which I hope to get covered with foundation assistance.
    With 2 infusions a year the cost is $236500, incredible!
    Don A.

  74. Amber says:

    35 year old female with RRMS. Diagnosed nearly 9 years ago and had gone through Copaxone and Tecfidera. I was allergic to Copaxone and the Tecfidera did not seem to do much as I had a horrid relapse at the beginning of this year and several not good MRIs while on the drug. My neuro and I agreed that Ocrevus was worth a shot so I got the first split dose back in 03/2018. I see many comments where people are expecting this drug to allow for improvement, I like to look at it as keeping things consistent and/or from getting worse. Chemo drugs are definitely not intended to make people feel better, at least not directly. Anyhow, I completed my first full dose over a week ago and feel pretty weak, exhausted, and have pain throughout my joints. During the infusion I had some burning in my ears (like a headcold situation). They were about to stop administration of the drug, but then I magically had some drainage (gross) which cleared it up instantly. Many comments I’m seeing here also provoke fear, I wish people would be more thoughtful to those of us who are actually on this drug. While it is scary that the risk of herpes related infections increases and we have a lower ability to fight off common illnesses, we are weighing the options here. Look at it like this, lose the use of my legs vs longer recovery time from the flu. Duh, messing around with the immune system is obviously dangerous, but ya’ll must be missing the point that the immune system (B-cells) is causing a whole lot of BRAIN DAMAGE. Personally, I think my brain is pretty important here and all the crazy-making doesn’t help us out.

  75. Marie Adams says:

    I am 75 and have had RRMS since my mid forties. My head is full of lesions. But, praise God I am still walking on my own. I have been on Copaxone, Rebif and Tysabri.I had an allergic reaction to Copaxone after they changed the preservative in it. Rebif left terrible lumps at injection sites that lasted for months. I all most died from an allergic reaction to tysabri. In July of 2018 I started Ocrevus. I had no bad reactions to it but I never noticed any change in my stamina until Nov.. (Aprox. 5 months later) I noticed I was walking straighter and that I seemed stronger. I will go again in January. I cannot say that this drug isn’t scary because it is. However, If it helps to make the last few years of my life better then I am willing to give it a try. I am concerened that the next infusion will be in January, always a peak season for flu in this area of the South. Not a good time to wipe out ones B cells. I want to tell all of you what supplements I have taken for years, Coq10, Vit D, B complex, Omega 3 fatty acids, and cranberry for UTI. My faith has subtained me through these past 30 year. I have learned to say no to a lot of reqest from family and friends. People often assume that if you are standing and you look okay that you are. We all knows this is a joke. Be kind to yourself, by this I mean, say to yourself, will putting up all of these Christmas decarations be a big price to pay for my health? Or can I babysit my grandchildren for a
    week? Always weigh your repercussions. And never give into this disease. Force yourself to try to put one foot in front of the other. I know that there are days when you just feel you can’t go on, but you just have to try to look this ugly disease in the face and say YOU WILL NOT GET ME!

  76. Melanie says:

    Not sure if anyone is reading the latest comments,but just in case. I had tried rebif, copaxone and gilenya, all of which still showed active and new lesions on MRI. I just had my 4th dose of Ocrevus, absolutely no side effects from the infusion, none from the drug that I’ve noticed, and not only did my MRI show no new lesions, some of the older ones had shrunk!! I feel better than I have in years. I know it can be scary and there are risks, but it’s like that for all meds particularly for MS. I just hope they can learn why Ocrevus is working so well for some, and apply that to new drugs with lower risks and higher effectiveness.

  77. Maya says:

    My husband is taking Ocrevus infusions and since starting them a little over a year ago his triglycerides have gone through the roof. Over 1000mg at one point and now in the 600 range, with no changes or apparent explanation other than the introduction of Ocrevus to his system. Normal levels are less than 150mg. With his debilitating MS he lives in a long term care home so his food, drug and sugar intake is monitored. He has never been alcoholic, but they told me today that his pancreas might fail and he will die a horrible painful death if they can’t reign it in. I am trying to process all this.

  78. M. Anastasia says:

    I just received my first infusion. I have secondary progressive, haveing lived with the diagnosis of ms and apls ( with transverse myelitis and clotting problems0 for about 30 yrs. Been on a number of drugs. MAJOR side effect from this drug resulted in my BP going and staying very high, accompanied by tachycardia, head, face and neck ache, tight throat muscles, and tight chest. I have not been able to find the bp hypertensive anywhere in the various literature and reports. Did notify the company for their study purposes and after 4 days this way going to my primary care. Am older and could just be my particular physiology. Always an adventure, if nothing else.

  79. Lisalisa says:

    I was on betaseron for almost 20 years (56 years old now), after too much scar tissue and an abscess I realized it’s time for a change. First 2 doses of ocrevus in September seemed so scary but for 6 months I’ve been stronger than the last 20 years. My last infusion was Tuesday (it’s Thursday now), still feeling a little beat-up but good to go. Yea it seems really scary but so far I have had positive results.

  80. Kim says:

    I’ve had four infusions of this drug, my last being around one month ago.

    Generally, it’s been fine. However, now I’m experiencing weird skin itching around my neck and ears and it’s driving me crazy!

    If it doesn’t resolve soon, I may pass on further treatment.

    I wonder whether there might be dental side effects, as a cavity was discovered yesterday during a cleaning. I haven’t had a cavity for at least 40 years!). Might be a long shot, but I still wonder!

    Also, I have been dealing with tennis elbow for the last three or four months. Are joint issues a side effect (again, another long shot!)?

    Since being treated with Tysabri, I’ve forgotten how bad MS feels (fatigue was the most common symptom for me). But after being implicated in PML, I was glad to discontinue the drug around 15 years ago.

    I don’t feel like I have MS, anymore, although, of course, I do. But I may stop infusions of this drug . . . .

  81. Tammy says:

    Hey Fellow MS navigators,
    I’m a 50yo female recently diagnosed with RRMS during what we now know was my 2nd flare in 6 years. Most symptoms from first were 95% reversed. Received no treatment then. Second flare received IV steroids and some complementary alternative immune system treatments and was even better…for about 6 months. Then apparently stress triggered again. Now doc is strongly recommending Ocrevus. Side effects are very concerning. They say there’s an increased cancer risk by have done no studies to determine if cancer gene is indicator for this risk?!? Anyone have any experience with this? Would getting tested for cancer gene be helpful? Thanks for any feedback. Your comments have been most enlightening!

  82. Stephanie Dana says:

    I have been in this drug for a about 6 1/2 years. I was on one of the clinical trials before it became mainstream. I was nervous but now I’m fine and I don’t have any side effects. I am 29 and was diagnosed when I was 22 and I have yet to have a relapse and sometimes I forgot I have MS. Take the chance. It work hurt. There may not be a cure but at least this will help.

  83. Mary says:

    I’ve had 4 Ocrevus infusions now. 2 were at full strength. So far so good. The only side effects that I had was lower than my usual low blood pressure. However the nurses were not concerned on bit. Said it was low but not dangerously low. And I felt perfectly fine! I realize that elevated heart rate can be another side effect. Amazing, I have SVT as well and it hasn’t affected me at all! Knock on wood, rap rap, LOL! However, I do believe I did have one side effect. About a week later I developed two small sores around my mouth. At first I thought they might be fever blisters or cold sores. But they never seemed to fill with fluid or break open as they can. Instead they’re still there annoyingly. They’re dry now and rough feeling. I tried Abreeva, herpecin and chapstick! They’re still with me! But good news is they don’t hurt nor bleed. They have to heal eventually, right? And, they haven’t gotten any larger. All in all I’m happy with the Ocrevus infusions. My neurologist said she was very pleased with my progress and my MRIs and lab work. So if she’s happy, I’m, happy!

  84. Daniel Karner says:

    Wow, there is quite a range of opinions expressed here! Having lived with MS for 22 years, and having used Avonex, Rebif, Tysabri, Rutuxin, and Ocrevus, I can honestly say that ANY of these meds are better than taking nothing. The goal is to put your MS into remission, and keep it there. So, what’s your plan? As far as I am concerned, I’d select the most assertive treatment option with a mortality risk below 5% (a figure which is 10-100 times greater than the mortality rates these meds carry). We are talking about slowing down the disease damage by 30-80% (which is what these meds offer). What’s another 1, 5, 10 or 20 years of manageable disability worth to you?I’m just a Ph.D. scientist who spent a great deal of my career understanding statistics, and in that light the concerns being expressed about PML, corporate conspiracies, and unscrupulous behavior by doctors or the FDA are grossly overblown. The odds are in your favor if you take a DMT.

  85. Barry Leon says:

    Been on Ocrevus since my diagnosis in 2017. No new symptoms. No side efeects or reactions. Everyone is different but it has worked for me so far.

  86. Tammy says:

    Good morning. My name is Tammy from New York City. I will be going for my fourth infusion next Sunday. First it did freak me out just sitting in a chair for five hours,With needles, tubes and things going through me. But it has worked. No new relapses. Again it does depend on each individual person. I wish everyone luck with future usage

  87. Angela says:

    I was diagnosed at age 20 had my first Solumedral infusion on my 21st birthday. I took my first dose of Ocravus in April (took 8.5 hours) it was causing tingling feelings in my throat making me cough they had to stop give Benadryl then start slow again. Then two weeks later took the 2nd half dose this time (6.5) hours. After I started having trouble swallowing; felt like a marble was stuck in my throat. Lost 20lbs in a month and still my Neurologist wouldn’t listen. A couple weeks went by and the numbness in my hands went away then a few more weeks went by and I had a Major relapse 2 months from receiving the last 1/2 dose. This relapse caused excruciating pain in my back so bad that I couldn’t move. I had to have my brother come down to my doctors office to help me out of the car to go in and see if they could help me. They refused to see me because I had no appointment. That same day I had a set of 3 MRI’s they found tons of lesions on my spine and on my brain and one in my brain stem which was the culprit of the swallowing problems. I was sent home to await the results of the MRI nothing for the pain I was having. Received a call from my neuro the following day stating my pain is very real… as if to say I was making it up?! He put me on Solumedral 3day drip and a week went by no relief another week went by still in horrible pain. Decided to go back to University of Colorado’s Rocky Mountain MS Center as I just got added to my husbands insurance and was able to start treatment there. Booked the first appointment I could, they continue to think this pain is neuropathic but ITS NOT! Its caused by the inflammation and scars on my spine… They took blood in the office in a separate room and charged me $5000.00 for blood work!!! I am now trying to fight those charges as now the insurance my husband just put me on all of the benefits for the entire year has been used in under two months from this one visit. I tried to go to UCHealths pain clinic about the back pain. The woman operator who answered the phone asked why I was trying to be seen and I explained for back pain. She asked if I had any other medical conditions and I said yes I have MS and she said WE DONT TREAT PEOPLE WITH MS as if people with MS don’t have pain… I have since canceled all appointments with the University of Colorado. I am now seeing an absent neurologist meaning she doesn’t listen either. Still no relief for my back pain and I am about to do another full dose of Ocravus and I am terrified as the half doses made me feel like I was hit by a car. I missed a ton of work and am unsure how much longer I will have this job. I now have this weird noise when I take a deep breath that sort of sounds like a cotton ball being rubbed together with another cotton ball. I have researched disability and MS recently and it seems as if because of all the lies surrounding MS people cant get disability when they need it. By lies I am speaking about MS being a deadly disease which it is. People refuse to call it like it is. Just like when I had my spinal tap they said it was painless… What a joke I was screaming in agony the entire time! I have lost complete faith in organizations like the National MS Society because they are all for profit. The only help they give patients is a long list of links the patient then has to read up on and research. Not helpful! I used to work for the Wyoming/Colorado chapter and because I was in the middle of a divorce I had a relapse and was fired. If doctors were to start patient on those throat exercises before it becomes a problem we would all be better off but they don’t. And because of this stupid opioid crisis doctors are refusing to treat our VERY REAL PAIN. I read up on the new laws guys and guess what?! Things like Cancer and MULTIPLE SCLEROSIS are federally ok to prescribe Opioids for but these doctors don’t care about your overall health. I am 33 and will be lucky to live to 60 I have been trying to get life insurance so my husband will be ok once I leave this torturous life but I cant seem to get anyone to give me a quote. Good luck all of you. Sorry for the negativity but what do they expect… I hear be positive all the time but what is the positives to this? The people who say they are here to help you don’t. We are lab rats!

    • Tom Anderson says:

      Read your own comments… You are a very hard person to believe. Pain can be very real, but it is also very impacted by the perceiver. A little of that going on here, I suspect. I don’t think lesions on nerves cause pain at the site. It’s the consequence of where those damaged nerves lead and what they do at the end of the line- like yours legs.

  88. Tom A. says:

    Wow! So many responses of so many types! Some hopeful, optimistic or grateful; some paranoid and even delusional (I was a Psychologist). I started Ocrevus almost a year ago. Prior to that, was on Betaseron (primarily, but for a period of Avonex for 8 months which went very bad- Avonex is a decreased dose of interferon beta which had no power for me), all since 1995. MS began with minor sensation symptoms (tingling and vision) in 1988. I am 61 now. I could write more than a book. But what can I ask or contribute that would be helpful?
    Well, first, has anyone experienced increased blood sugar levels along with their Ocrevus infusions? It’s probably because I am old 🙁
    Two things come to mind as far as contributing- First, keep in mind that all of these DMT’s are meant to halt or slow progression, not fix what has already happened. And I am the poster-child for “getting better after relapse”. My body was able to repair some of the damage, and I learned new skills to replace the old ones lost, so I looked normal, but couldn’t run, have wild sex, or hold pee too well (so wear a diaper when you have to). I had been using a cane and a wheel chair, shook quite a bit which also affected vision and speaking. That all WAS gone since 2000. No new lesions or inflammation on MRI since then, NONE. But I am getting worse, which brings up contributing point #2.
    They implied hopefully, but never said, that secondary progressive MS would not come if your relapses during relapsing-remitting stopped. So I am here to say, that axonal deterioration and nerve loss, without inflammation (therefore without MRI evidence), happens. My walking is much more clumsy and difficult now with much less stamina. How bad will it get? My bladder is almost useless (well, maybe not “useless”). I have spells of fatigue that I never had before. This has all happened in the last 3 years. It meets the criteria of secondary progressive MS called “non-active with progression” (one of four types), kind of an oxymoron if you ask me! So we (my MS specialist and I) switched from Betaseron to Ocrevus in hopes that it might impact my situation. So far, no good. But we’ll “see”. Ocrevus is an anti-inflammatory medicine also, and my disease is apparently not inflammatory, so any benefit will not be observable on MRI. The Doc thinks it might be the aging process of someone with neurological damage from MS: dying nerves. So that is my point. Seems to me it is best to find and take your DMT and prevent as much damage as possible, because this disease, even when you think it has stopped, apparently hasn’t. It will return and undue the repairs you have done in a slow, progressive nature. So the less damage you have to start out with, the better. Good luck all. Tom

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