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.

Infections

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.

144 comments

  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?

          • 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

        • 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.

      • 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

    • 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!

    • 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

        • 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.

        • 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.

      • 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.

        • 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.

        • 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

  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

  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?

      • Ferra says:

        My husband done great after the infusion. No issues at all. Couldn’t even tell he had anything. Just now 6-8 weeks later he feels horrible. Heat does not help

  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

  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

        Franny

        • 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!! 🙂

  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

  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.

  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:

      TO EVAN….DID ALL THE CHANGES SHE HAS GONE THROUGH HAVE ANY BETTER RESULTS? MY WIFE IS DOING SUPER ON THE COPAXONE (8 YEARS) BUT CAME HOME TODAY SAYING HER NEUROLOGIST WANTS HER TO CHANGE TO OCREVUS. I’M HAPPY THAT THE COPAXONE HAS BEEN THE THING FOR HER. DID YOUR WIFE’S CHANGES CHANGE ANYTHING THAT YOU COULD SEE, TO INCLUDE HER OUTLOOK?

  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?

  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.

  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:

      Dustin,
      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.

  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?

  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.

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