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.

71 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?

    • 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?

        • 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.)

  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.

  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).

  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

  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.

    • 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

  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.

  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?

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