5 Things to Know About the New MS Drug Ocrevus

BREAKING NEWS: FDA Approves Ocrevus as 1st MS Treatment for Both Relapsing and Primary Progressive Forms

The multiple sclerosis community has been waiting with bated breath for the approval of the drug Ocrevus (ocrelizumab), which will be used to treat patients who have relapsing MS and primary progressive MS. The FDA’s decision of final approval is expected on March 28, which coincides with Multiple Sclerosis Awareness Week. In preparation for the announcement, we’ve put together a list of must-know facts about the drug.

Ocrevus will be used for treating primary progressive MS. 

In clinical trials, Ocrevus was found to slow the progress of disability in primary progressive multiple sclerosis (PPMS), which accounts for approximately 10 percent of MS patients.

Ocrevus will also be used for treating relapsing MS patients. 

Ocrevus was found to slow disease activity in more patients taking the drug compared to those who were taking Rebif.

Ocrevus targets myelin-attacking B-cells. 

Ocrevus is an anti-CD20 monoclonal antibody which works by targeting the mature B-cells which contribute to demyelination and damage to nerve cells. Most MS medications currently available work by targeting T-cells. This is one of the only medications that attacks these specific B-cells.

RELATED: Our columnist Ian Franks gives his views on the impending approval of Ocrevus.

The outcome of the clinical trials. 

More than 1,600 MS patients participated in clinical trials for Ocrevus and 94 percent of participants had fewer brain lesions during the 96 weeks of treatment.

There was little increased risk of infection. 

The clinical trials for Ocrevus also found that while patients taking the drug did have a slightly increased risk of common colds and flu, they had no significant increased risk of other infections when compared to patients taking the alternative medication, Rebif.

RELATED: Read more from Genentech’s medical director, Peter Chin, about Ocrevus and what it means for the MS community.

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

135 comments

  1. P Maher says:

    How about some specifics in the cancers that occurred in the trial? My understanding is there were more cancers in the drug group than in the placebo group but nobody is reporting apples-to-apples numbers that give a realistic perspective — or about the types of cancers that occurred and how serious they were.

    • Tim Bossie says:

      Hi Patty! Thank you for the comment and raising the concern about the reported cancers within the drug group. We are trying to find out more information on this. This post was a basic overview of Ocrevus in order to release some information before the expected approval. We are awaiting the final report from the FDA in order to write a more in-depth post. We do know about the concerns, but haven’t found specifics as of yet for a definitive report. With that said, we do have a transcription of an interview our news team did with Genentech’s Medical Director, Peter Chin that does address this issue. You can find it here. https://multiplesclerosisnewstoday.com/2017/02/28/transcript-of-interview-with-genentech-peter-chin-on-ocrevus-for-multiple-sclerosis/

      • Sathaiah Dadi says:

        Hello,
        What about the established drug Rituximab..??
        is there any difference between those two..??
        Any comparisons..?/
        I am just graduated from Medical school and curious about these things.. ?/

        Thank you

      • Donna Gregor, mother of a son who has MS says:

        And you left out the most important info “the cancers were within the drug group”. We are not guinea pigs, we are human beings. When you find out more about this drug, please do not leave out any information that will help those in making an intelligent decision, yes, cancer IS a big deal.

    • Victoria E. says:

      Just for your info it says: Ocrevus can cause serious side-effects, such as an increased risk of infections and cancer, notably breast cancer. About one-half of one percent of the patients who took the drug developed cancer, which was twice the rate of those who did not take the drug.

    • joan quilter says:

      Good point. I’ve noticed that side effects and risks are not highlighted. I don’t think Big Pharma wants that.

    • Alice K says:

      Not to be rude, but Who cares about cancer? (well, I don’t anyway). I’d rather die now than continue with what is going on in my body with primary progressive multiple sclerosis. It is hideous and unrelenting; in the space of 4 months I have gone from walking my dogs, emptying a personal trainer, gardening, housework, taking care of my aged mother, playing a musical instrument and driving, to being wheelchair bound and doing nothing. This is no life so I’d rather die of cancer than live with ms. I already get every infection (cough/cold) as my immune system is so bad, so I am armed with a beautiful facemark and disposable gloves, especially when I travel. I can have breasts removed and replaced with implants if it is a great risk. Ive had cervical cancer and a hysterectomy. Ocrevus here I come!! (if the ever make it available and affordable in Australia. Otherwise I’ll go to the Netherlands had get it there, if possible

        • cara connelly says:

          Narelle CHamberlain- did you get cervical cancer from Tysabri- I developed a blood cancer that sent me into acute renal failure due to Tysabri- When I contacted Biogen to add that to their packaging, I was met with crickets.

        • Donna Lazenby says:

          I was on Tysabri for 13 months. I developed Breast Cancer BETWEN my Yearly mammograms and had a Lumpdectomy in 2012. The doctor also did a Pet scan to search for other cancer in my body. My GYN doctor discovered a baseball sized Teratonomia behind my right ovary. I had a hysterectomy 3 weeks after my breast cancer surgery. I had seen the GYN doctor for years and NEVER had any problems. I’m am very concerned about starting Ocrevus after the time I had with Tysbri.

        • Christine says:

          Did you do the plant based diet in lieu of MS therapy or with it? Did it reverse any symptoms and disability you may have experienced.

      • Brittany says:

        I have PPMS as well and it’s a struggle everyday to get up and function so I agree. But before you get the orcaveus it’s about where you go and what pre-cautions they take. I’m getting mines done at University of Penn and They have taken the most blood samples ever to make sure I don’t carry the cancer traits and I’ve been cleared. If you have an alkaline body anyway cancer can’t live in an alkaline body. Plus the Lord is on my side with a lot of Pray and giving the process to him it keeps me at ease.

        • sherry Fitzgerald says:

          hi! who do you see at penn and how long have you been on Ocrevus? i just started and my neurologist did not screen for cancer traits.

          thANKS !!
          SHERRY

        • Nora Smith says:

          Yeah, the Lord is on your side. That’s why he chose to give you MS. I get up every day and wonder why God had to give me this terrible disease when I did nothing to deserve it. There are lots of people who do deserve it, but not me. People who are mean, rotten to everyone, they are all perfectly healthy. I just want this disease to be gone.

  2. John says:

    I agree with P Maher. It is irresponsible not to include information about the increased incidence of cancers in the Ocrevus group.
    Why would you leave that out?

  3. Jenn says:

    Why would you choose Rebif? It is a dinosaur in treating RRMS. The newer pill therapies like Tecfidera have an over 50% reduction in relapses. Rebif is only 30%.

    • JL says:

      I have been on Rebif for 5 1/2 years and have seen results. I’m seeing one of the highest respected Neurologists in the field (Dr Stuart Cook). Given his experience, I don’t think he would keep me on a Dinosaur drug. I did try switching to Tecfidera Oct/Nov but my body did not take well to it and after missing many days of work, suffering with a bad bout of the Flu (104 temp) and weeks later severe abdominal pains which made me go in for extensive tests , all fingers pointed to Tecfidera. I guess what’s good for some may not be for others. So I’m back with the Dinosaur (As I always said in Business,the Devil You know is better than the one you don’t)……..I will be speaking to my Neuro about other options but since being back on Rebif , I don’t have any of the symptoms I was dealing with months ago.
      Keep Your Mind and Body Strong!
      JL

      • Ron says:

        I’ve started on betaseron 1/93
        Between 97 and 2000 I switch between Betaseron and Avonex
        By 2000 I full committed to Avonex

        About 3 years ago I tried Tecfidera but my WBC went too low. I started getting every infection and never seemed to get rid of colds, etc.

        Went back to Avonex. Kept me walking 27 years

    • JC says:

      Yes True BUT Tecfidera has bad side effects. I’m speaking from experience. The stomach issues that occur are Excruciating!!! I don’t recommend it to anyone

      • C. Mullican says:

        Mileage varies. I didn’t have any side effects with Tecfidera, but my neuro switched me to Rituxan because I did have a few new lesions on my last MRI.

      • RB says:

        Just a note about “Tecfidera has bad side effects”. It should say “Some people have side effects with Tecfidera”. I checked the stats on how many get either GI issues or flushing and 50% of people get none of the two. Also, out of the 50% that get one or the other or both it seems that, for some these side effects subside after a couple of weeks.
        Finally, the side effects are reversible, i.e. when you stop, they stop.
        I was on Tecfidera for two and a half years. I stopped because it was not effective for me. My neuro wants to put me on something more potent: Lemtrada. The bad is that it has bad side effects, cancer, new thyroid immune disease (33% chance), etc. Yikes!

        • Becky says:

          Yes, everyone reacts to these DMD’s differently. Tecfidera put me in the hospital with a “cardiac event” and I couldn’t hold anything down for 2 weeks, 1 of them being spent in the hospital. Rebif caused me Thyroid and Liver issues. I’m hoping that Ocrevus treats me better.

    • Dan says:

      Tecfidera also has about 12 reported PML cases. There are no PML cases on any of the interferons.

      Glienya has had a PML case or two and can cause cardiac issues.

      I had an awful time with Aubagio.

      Tysabri is well, Tysabri.

      I’ve been on Interferons for 23 years and still walking, though not as well as I once did.

      • Marsha Haas says:

        My dr wants to switch me from tysabri which i have been on for over 10 years to ocrevus.I like Tysabri.i have a dead wheel chair battery a walker hanging on the wall that i also havent used since i was on tysabri.My only side effect is i get cold.He says this new drug has no pml reported but i still say its new.i tested positive for the jvc virus that causes pml.it is a small percentage.The thing is all MS drugs can give you pml.I just dont feel comfortable switching.I really dont know what to do.

        • Char says:

          Hi Marsha, like you I was tested JC positive and on Tysabri for about 6 years. I was not 100% but I had a quality of life. I have gone rapidly downhill since going off of Tysabri. It was like a miracle drug for me.
          The sad part is no matter what dangers are involved with an MS Therapy you will take the chance for some quality of life. I start Ocrevus soon. I am now with a walker/wheelchair since off of Tysabri.
          I wish you the best. Only you know whats right for your body.
          Stay in tune with how you feel. Pray hard and know all of us with this illness share an empathy and understanding of what this illness can do IF WE LET IT! Be strong!
          God Bless You.

          • Tammy says:

            Hello Char,
            I hope you are doing well and that you’ve had good luck with Ocrevus. My doctor wants to switch me to Ocrevus, I’m on Tysabri now which has been good besides lately having some symptoms sneaking up but not sure if that’s stress related or if I just need a change of meds. I’m nervous about going to Ocrevus even more so as there isn’t much information out there in regards to patients who switched between Tysabri and Ocrevus I don’t know if I want to be to take chances. As we all know you can really fix the damage once it’s done. So when they say I can always go back to Tysabri I think yes after the 6mths I can and pray that you don’t have a bad relapse before. I have 2 little kids and can’t afford to play guessing games of trial and error. Just freaked out a bit. I wish there was more information. I get sick a lot with everything my kids bring home now from school. Did my doctor mean it’ll get worse and my chances of being sick are even higher. I don’t want to be physically sick all the time either. I get insane headaches now on Tysabri but will they get worse as I can’t stand them when I get them. I know there are no definitive answers and everyone is different. But this lack of information sucks. I called Ocrevus and wish they had more infor but they said their trials were against rebif. Which of course completely didn’t work for me at all. My primary said trust your instincts. I hate the stress that comes with these choices. Hope to hear wonderful positive insight and results from you and that it’s changing your world for the best. If you can let me know your opinions I’d appreciate it. Thanks so much.
            Tammy

      • Betaferon served me quite well for 18 years and I am and have been on Gilenya for two years and nearly 12 months ago I was diagnosed with progressive Heart Disease resulting in 4 stents, a Diabetes diagnosis and within 3-4 months another three arteries diseased resulting in a triple by Pass at 50 years of age. Thank you Gilenya, I have since learnt Gilenya can cause cardiac probs and with the genetics in our family I wouldn’t have started this drug if I had known. Now they want me off it but apparently I could get Gilenya Rebound Syndrome from
        Stopping the Gilenya 6 weeks before starting he Ocrevus . I don’t know what to do. Heart disease 🤔or risk a severe relapse and new lesions🤔 What to do 😬

    • Jessica says:

      Hi Susanne,

      It is my understanding that a lot of neurologists prescribe currently available MS drugs to people with SPMS by stating that they have a “relapsing form of MS.” In this particular case, Ocrevus was actually tested in people with “relapsing forms of MS,” which included people with RRMS and SPMS. The results from the OPERA I and II trials looked good for people with SPMS. I would encourage you to talk to your doctor about your treatment options.

      Best,
      Jessica

      • Cath says:

        I had the same question regarding SPMS. MSAA had a nice article that relieved my concerns…SPMS is classified as a form of RRMS! 🙂

      • Carol Reitz says:

        Originally diagnosed w/PPMS. Second neuro – RRMS. I guess she took into account 2 strange “episodes” that had happend to me 20 yrs earlier. Two yrs later she said I had progressed to SPMS which I had pretty much had figured from the beginning but nice of her to delay telling me.
        Anyway, my point is SPMS or PPMS – who knows? I don’t know the science but it appears we are the same…and maybe new meds would work for both. I just want something to help all of us Progressives! FYI – check out M1S-416. It’s a long way away but looks promising.

  4. Diane says:

    How long is the treatment administered? I know Tysabri is over an hour and then your monitored over an hour. Also what kind of monitoring, test do you need to be monitored for? Like do you need to be tested for JC virus ,how often should you have blood work done. I know it states kess side affects but it is a new medication. Remember Tysabri was once pulled.

    • Kelly says:

      Hey Diane, I am in the OperaIII trial.. first dose will be given slowly over a few hours on two separate days two weeks apart(half dose given each time). Plan to be there about 6 hours or so because they will pre load you with IV steroids then wait an hour and then give you the drug so you don’t have a reaction.

  5. Sandi says:

    Any idea of the cost of this new drug, also is the drug company going to offer finicial money to users like tysabri does, and last question is our insurance going to accept this new drug and cover most of the cost, I pay for federal blue cross and blue shield I was able to keep this insurance after I had to leave my govt job, although I do pay about $600 a month for it, ( family plan) they still won’t pay all of the cost of the tysabri and that’s where the drug company kick in to help with the remaining cost,
    Thank you

    • mortimer says:

      65,000 USD a year, was reported in the nbcnews dot com article. a small number of people developed breast cancer, in the early clinical trials.

  6. Wendy Baker says:

    I hope it does what they say it does not because that would be wonderful. I will definitely be talking to my neurologist about it. I’m going down hill fast. I want to be able to climb that mountain back up. ??

    • Necia Saltmarsh says:

      I agree with Wendy. I am 62, and have had PPMS for 15 years. I feel that I am entering end stage MS, and I can’t imagine that I have much longer to be here. My family has been devastated by auto-immune diseases. (I have 3, at last count.) It has started in on the next generation, as well. When will this med, actually be available?

      n
      e

      e

  7. Lindsey Hook says:

    Hi I have been receiving tysabri for 2 years and am becoming more and more concerned about PML. My neurologist tells me that all treatments have side effects that are just as scary, is this new option ocrevus worth discussing changing to ?
    I have not experienced a relapse since the severe one I had leading to diagnosis – tysabri does seem to be working
    so maybe leave well alone is the safest option.
    Lindsey

    • Victoria E. says:

      I took Tysabri for 6 months. Went in JCV neg and after 6 months came out Titre level of 3.4 It would have been a great drug had I been able to stay on it. Stay strong MS Warrior!

      • Bill says:

        That is why they start you on a lower dose and gradually increase it. I have been in it for 5 years and have had NO new lesions. However, I was on tysabri for 23 months and I feel it worked the best, but after testing JC positive and later testing very high JC, I decided to change to tecfidera

    • STEVEN IZARD says:

      Hi Lindsey, I took injections of Rebif for 14 years, and then switched to Tysabri for 2 years, (since I tested positive for the JC Virus), and now I am taking Aubagio. I thought that Tysabri was great and wish I could have stayed on that, but I didn’t want to take the risk of the PML disease. I think I will stay with my current medication, until I hear more feedback on Ocrevus, as this does sound like a promising new drug. But it is just another expensive drug being pushed by Big Pharma. Why can’t all these drug companies put their heads together, and come up with a cure instead of seeing who can make the most money for a newer drug? $$$

      • MMK says:

        Big Pharma will NEVER look for a cure for any disease 🙁 why would they? they can’t rake in millions of dollars a year if they cure MS, Cancer, Lupus, Lyme, Diabetes etc…the list goes on. We need to fight for ourselves. Don’t ever give up!

      • Jan says:

        If they found a cure, then the pharmaceutical industry would lose a lot of $$. I had my 1st round of Ocrevus last May & my next one is in Dec. Haven’t had any MRI’s since being on this so I don’t know if it’s working or not yet. I am using a walker except for when out shopping, etc. Then I have to use a wheelchair. I was diagnosed with MS last April.

        • Stacey McKinney says:

          Hi Jan I just had my first does of Ocrevus on Nov 16th ad my second in in two days. I felt great the 2 days after then was sluggish for 10 and now I am ready for Thursdays does. Totally agree Big Pharm will never find a cure because of money. It is all a guessing game for us patients to find what is gonna work for us. everyone is different. I was on Rebif from 1993-2012 it worked fine I just could not do the shots anymore. went to Tysabri 2013-2016 then stopped all meds felt not great. Had MRI in July when I had an attack I now have a lesion on my brain stem. So scared but, Ocrevus in the next test. I have given it to God. I will deal with major problems when they arise so confused.

  8. Candace Rifkin says:

    If Rituxan treatment at once every four months showed breakthrough activity, would there be any point in assuming Ocrevus would preform any better? Also if one needed it every 3-4 months will that be allowed? Additionally what is the cancer rate compared to Rituxan? I really don’t understand why you tested it against such an old drug as Rebif. We now have no information to guide us vs what must of us are on which is not Rebif?

    • E Murphy says:

      I am lucky that I have all the right and MS Rituxan is not. For MS treatment but it is already it has helped my ms and ra/lupus why has she not been approved for MS use I Figure money ?

  9. Daryl says:

    What I can’t wrap my arms around is that they say my MS is stable but when I got diagnosed with MS I had 9 brain lesions and now I have 58 and can’t walk very well with the last 3 pml test coming back positive

    • Cath says:

      Daryl, ask your doctor about your current physical status and certainly about your PML results. Is the drug effective for you? I am running into the same issue and have an appointment next week to discuss if the drug warrants the risk with positive testing for PML.

  10. Kelly F. says:

    Can they post more information on the “upper respiratory” and “Lower Respiratory” infections they have seen with this med please? Do a story on THAT! I have been in a phaseIII trial and have complained of a cough for all 5 months with THICK Yellow/White/Green Phlegm that will not clear up or go away and had an ER chest Xray with lower lung ataxia that they keep giving me the run around about looking in to but yet tell me at the same time I am supposed to go through the study first before seeking treatment elsewhere. Having a cough like that for 5 months straight is Not normal and is not a common cold or flu. Also, giving patients in the study the run around is not the best practice either. I want answers!

    • Tracy says:

      If you are in a study you can stop at anytime. I would think they would try to help you. If you are sick with a cough you dont want to keep getting infusions. I am in a study too!

    • Michael Lofgren says:

      I had the same lung problems as you have had..I have been treated by USC Hospital in Los Angeles,ca….I want through a battery of Tests…So, My Respitory doctor said….A group of doctors said that it looked like I have Sarcosis of the respitorary system..They Started me on heavy dos of Prednisone and then I quit coughing and I could breath again….and now I am still taking this medication about 5mg per day and take my copaxane….feeling a great deal better…I can now walk longer

    • Michael Lofgren says:

      I have been on alone for over 10 years then I got this bad cough for almost a year.. My lungs doctor. Put me on a heavy dose of prednisone for 3 months and then my breathing came back normal normal More coughing…now I’m at 5mg daily and doing ok it has been 5 years now

  11. Suzanne says:

    For the last eight months I have continually gotten a lot of pain. The pain now is 24/7 it is never below a 4 on a scale from -10. I sleep in a chair don’t remember the last time I was in a bed. By the end of the day I am taking baby steps and can’t even lift my leg up a 4 inch step. Will this drug benefit me?

  12. Scott Groff says:

    My wife has been taking Gilenya for quite some time. She was actually one of the first ones in the country to do so. She does experience side effects though.
    What would she gain/lose by switching to Ocrevus?

    • PeninaD says:

      Ocrevus works on a very different pathway than Gilenya.
      There is currently no way to accurately predict how any single person’s MS will respond to one drug vs. another.

  13. Lori Walton says:

    I have been taking Gilenya for almost 2 years. Just started last year with getting sick (upper respiratory infections)twice in 3 months. Would I benefit or not by switching to Ocrevus?

  14. Melody A Fuhrman says:

    My mom has been on tySabri for yrs, great success keeping MS in check. She no longer can do Tysbri due to her pacemaker. Does this new drug require MRI’so?

  15. Colleen says:

    I had to go off Tysabri years ago after testing hi positive for the JC virus. I her PML is a possibility with this med as well. Will my bloodwork from 7 years ago have anything to do to determine if I’m eligible for Ocrevus? I’m currently on my 6th med and have had RRMS for 23+ years. Thank you!

  16. Olivier says:

    I have now a progressive form of MS.
    First diagnosed in 2000, I did take many different medications from interferon to gylenia…

    For the last 2 years I’m taking LDN + Biotin + Lipoic acid + vitamin D and for the first time, my last MRI has shown that my MS is inactive.

    First of all, LDN is safe (no crazy side effects such as cancer) and second of all, it cost me less than $1 a day (far from the $65000 for two injections of Ocrevus which will give me less than 25% of chances of getting better.

    I already have MS, I don’t need another sh—y disease and so far I might have found the best way to manage my MS.

    I really think (based on my own experience) that the best way and safest way (and cheapest way) to treat a progressive form of MS is LDN plus supplements.

      • JanP says:

        LDN is low-dose naltrexone. Naltrexone is generally used for treating opioid addiction. Low-dose naltrexone is an “off-label” use of naltrexone and has been helpful for some with MS. (Not me, alas, but some fortunates). Biotin is one of the B vitamins. There was a small study in France, if memory serves, that showed some promising results using high-dose biotin. Biotin has helped me significantly. You will find biotin at a vitamin store or Walmart, but it will not be high dose. I take 300 mgs. a day (that’s 300 milligrams or 300,000 micrograms). You can buy it without a prescription but you have to look around online to find it. It’s about $50 for a one month supply.

    • Joan Higgins says:

      I am with you all the way Oliver…was diagnosed on the first of June last year….prescribed Gilenya even though my neurologist had no idea what stage I was at….I decided to get proactive after no improvement in fatigue and bladder issues…Also Gilenya had raised my liver enzymes to 5 times the normal level!!! HELLO! Started LDN two weeks ago…bladder issues resolved within first 5 days and I am definitely NOT fatiqued anywhere near the levels I was. I have nothing to gain by posting this..but come on guys be human and give this drug a FAIR TRIAL!!!.

    • Liz W. says:

      Olivier, Can I please know what the doses you are using for Lipoic Acid and Vitamin D? Thanks so much.

      Liz

  17. S.J says:

    First time reading this blog. No one on Copaxone? I’ve been on it for 17 years, no exacerbations, very slow progression. Diagnosed 29 years ago when there were no drugs, then a lottery to get on Beta Seron in the early 90s I think. Still had flares treated with methylprednisolone infusions. But eventually white blood count so low I had to go off it. Been on Copaxone ever since, no side effects. Interested in this new Ocrevus but hard to justify a change when Copaxone is working so well.

  18. This is great news. I would love to see HSCT approval from the fda. Used around the world. Been in clinical trials for 16 years. Way to long. Guess the pharmaceutical companies haven’t made enough money yet.

  19. Patterson says:

    This has all been such great information. MS DX 2009, been on betaseron with a few oral and iv steroid infusions. Wanting to be on something else, especially having problems fighting off infection (very important with me being a nurse),but not willing to trade it for cancer. More research and stats needed for me.

  20. anna says:

    is this available in Britain this new drug ocrevus? have recently been diagnosed with ms and my neurologist wants to start me on lemtrada never had any deisease modifying drugs yet just the steroid metro something for my attacks. would appreciate any advice thanks

  21. Mandy says:

    Is there anyone who has been treated with the Ocrevus to give their input on here? like to know their experience with it and do they feel the results are worth the chance of cancer. Obviously the cancer word for any likely chance of getting is scary but there are so many drugs that all have possible damaging consequence. My husband is newly diagnosed but apparently has had for years. We just did a bout of Copaxone and after 6 months scan it shows one lesion progressed but no new. We are now having to find new drug. Ocrevus was said to be great but with it being new there is not a lot of long term affects to be noted yet. The breast cancer is scary but the likely hood of it may be minor for my husband… Thoughts on that, would be appreciated too

    • Tim Bossie says:

      Hi Mandy, you are right that any risk of cancer is scary and can cause some apprehension about taking a drug like Ocrevus. Since it is new, there isn’t a lot of information about any elevated risk of cancer. While the trial did show slight elevation in one group, for the most part, the “risk” is no different than the regular population. That does not mean it can not happen, but that sometimes when the word cancer is used many people induce a lot of panic into the situation. We do have a few Ocrevus successes on the pages of our site and in some comments if you have time to go through them. 🙂

    • Missy Schlarman says:

      Hi Mandy, I am an Ocrevus patient. I was diagnosed in Sept 2015, and like your husband I too started off on copaxone. But at my 6 mos recheck I jumped from 9-13 lesions. So off to Tysabri I went. and I loved it! (as much as anyone can say “yeah I love a infusion drug that isn’t designed to make me feel good!”) Unfortunately tysabri had to leave me after a little over a year because I tested positive for the JCV virus. And now its Ocrevus. The new Super drug. If you can survive the side effects(the ones they don’t mention) and be lucky enough not to get the ones they do tell you about. My honest advice if he isn’t symptomatic or worsening right now or even if he is, truly I would look into tysabri. Or maybe a couble others before you end up at Ocrevus.

      • Gina says:

        I had the exact route you did. Just started Ocrevus super scared. What side effects have you experienced that they have failed to share?

  22. Lauren says:

    My mom’s neurologist advises her patients that Ocrevus was NOT shown to help female patients. Why can’t I easily find information on this on the literature online? And what do you know of this? Thanks

    • Missy Schlarman says:

      I’ve heard nothing like that? and I have read the paperwork backwards and forewards. I’m guessing it’s because of the risk of breast cancer……..

  23. Angela Perry says:

    I’m looking for a dr. to prescribe Ocrevus. I talked with a dr. in San Antonio. The problem is that is 4 hours away. I live in Cameron Cty, Texas. I’ve searched in McAllen and Corpus Christi with no success. Any suggestions?

    Thank you

  24. Craig says:

    I have read everything I can on Ocrevus and am back at the same place, what to do? I was diagnosed back in 2012 with PPMS (confirmed by a second opinion at the MAYO in Rochester MN)I waited a year to get on any drug, mostly out of fear. My second MRI showed a second lesion on spine nothing on brain so I went on Avonex (Interferon)seemed to be effective as no more lesions with minimal side effects and not much progression. Until, this past MRI which showed another lesion on spine and as dr. stated it was concerning. Long was to get to my question but as the drug is so new and the only one said to help with PPMS do I switch? My Dr. is hesitant but I only have one life no second chances and from what I see MS is not reversible so… Being PPMS is 10% I would guess most Dr.’s have limited experience? I am planning on a second and maybe third opinion as well. Afraid of the unknown!

    • Craig says:

      Well after 6 moths my insurance company has added it as a covered therapy. Now the decision was to be made. I consulted my Dr. and made the decision to go on Ocrevus. First round was done March 12 and had the itching/rash which caused the treatment to be slowed down, took 6 1/2 hours total. No other side effects. Second round was just completed with no injection issues 4 hours total. It has been 5 days, no side effects to note. Will see how next 6 months go. As from what I read with PPMS any changes may be subtle? Biggest gain (if that’s what it is) is no weekly shot of Avonex.

  25. Tiffany says:

    I just received the second dose of the the initial 2 week infusion yesterday. My next dose is now not due until February. I was oh tysabri the past 2 years. Tysabri made me so tired on infusion dates and took so much of my time. (I’m a hard stick for the nurses) this limits my infusion time now (every 6 mos vs monthly). So far I’m a little flushed today and warm, other than that no other side affects. My neurologist stated the studies showed people got breast cancer but it was not proven to be from ocrevus. He told me to do monthly breast exams anyways, and he also ran labs to be sure I didn’t have hep B. Good luck to everyone. My MS is relapsing as of now and I completely agree I would choose med over MS side effects. ❤️

  26. Jennifer Chambers says:

    I had my 1st dose today of Ocrevus. Half way through my throats and head started to hurt nothing to bad. I finished the infusion had some labs drawn and I went home. As soon as I walked into the house the nurse called. She said my WBC was at a 28, I needed to go to the ER immediately for testing. By this time my neck and shoulders were starting to hurt as well. I was given all sorts of tests (X-ray, blood cultures). I was givin Morphine for the incredible pain! That’s worked wonders….. It was also found out I had a extreme lactic acid blood test which was the reason Inwas in so much pain. Home now from the ER… pain is much better:.. waiting for the results for the blood cultures. Glad they decided to let me go home… with a WBC that high I imagine I would have caught all sorts of nasty bugs just being in the hospital. I hope I can continue this medicine…..

  27. Helen Schneiderman says:

    has anyone had a positive experience after the infusions? I have had primary progressive MS for 41 years. my first infusion is tomorrow and I’m feeling rather scared as I’ve read nothing positive on this site. I hope someone can allay my concerns. Thank you

  28. Deb says:

    I had my first infusion of Ocrevus 2 weeks ago and will get the 2nd dose tomorrow. I had blood work prior to my infusion. They dosed me with steroids and benadryl right before the infusion. I had mild itching during the infusion and developed a mild headache following it. I had no other issues. The company does offer financial assistance as long as you do not have government insurance. My insurance company covered the medication.

  29. Steve says:

    what about gilenya? I’ve been on it for 3 years now and have had no relapses or new brain lesions. Is there a way to get a comparison of the meds, both new and old?

  30. Bill S. says:

    I have read through the many comments so I will tell my story. I was diagnosed 4 years ago with Relapsing remitting MS. I was 67 at the time . My local neurologist put me on copoxine . Five months later my MRI’s showed many more lessions . I also went blind in my left eye after optic neuritis. I was headed downward and on a walker. Since the local neurologist never treated anyone with other than Copoxine I decided to go elsewhere and found a very fine neurologist in Savannah. I was put on Techfadera which I tolerated but after further MRI I had more lessions…ouch. At this point I saw new sysmtoms as I could barely walk , lots of numbness and it was affecting my face and jaw, not to mention the the MS hug around my abdomen. After a year of this madness , I knew I needed to do more and a trip to the Mayo Clinic in Jacksonville confirmed.
    My blood work said I was I was JC positive but my neurologist wasn’t concerned and I started Tysabri. Since that time it has been a wonder drug for me. Within a year the sight in my left eye completely returned, I walk and run and all previous syptions of the MS disappeared. My MRI’s are stable and no new lessons. I went back to work and play tennis at a high level again, As long as your Blood Titter level is low , as mine is I plan to stay on this miracle drug. God bless all of you who are struggling with this disease.

  31. Kim M says:

    I started on Ocrevus June 29th, & July 14th. It has been a miracle for me. My only issue is I’m having major hair loss!!! I’m to the point of I’m going to have to invest in a wig. Is anyone else losing their hair?

    • Karen says:

      Yes – me too. Clumps of hair shedding . I had my 1st infusion in August – Ms seems good but my hair is super thin now —

      • Stephanie says:

        Just finished my second infusion on Feb 28th and the past week I’ve noticed handfuls of my hair in the shower falling out. Any slow down as time has past with your hair loss?

        • Marie says:

          Hair loss?
          Kim, Karen and Stephanie If you don’t mind sharing I’m curious to know if your Neurologists explained how/why hairloss happens, whether age and prescription hormones are factors and if Hydroxy25/Vitamin D matters?? Have any of you also had issues with your skin and nails since they’re all related?
          Me-40, Dx’d 2015, Rebif 2yrs, never been on birth control, no children.
          Rebif made me feel like garbage and I always felt better when I forgot to take it so my Neurologist suggested:

          Ocrevus
          April1st + 1000mg Solumedrol, 100mg Benadryl, 1000mg Tylenol
          *Questioned prophylactic doses*
          April21st + 100mg Solumedrol,
          50mg Benadryl, 500mg Tylenol

          In addition to increasingly brittle nails and dry hair, my skin was problematic the 10yrs prior to diagnosis with unexplainable single bumps/sores/spots on my arms & legs that were always deemed “Atopic dermatitis” by physicians.
          My differential diagnosis lab values for Vitamin D /Hydroxy25 levels were very low 2years ago so I suppliment this now by adding no less than 10,000IU/day minimum.
          I feel the difference whenever I’ve forgotten to take it after 2weeks.
          I’m so sorry that you’ve all lost hair and I pray this is a short lived side effect.

  32. Chris Weir says:

    At infusion center finishing my first dose of Ocrevus. I seem to be tolerating it well. Dxd in ’94 and am SPMS stage. Took my last Gilenya pill yesterday after almost 6 years. Avonex, Rebif and Copaxone and lots of Solumedrol before that. Here’s hoping this latest drug slows the progression of MS without deal-breaking side effects. Time to schedule a mammojam.

  33. Jake says:

    How many people have on this forum or whatever, have tried tecfidera? Or copaxone? I’m just looking for some reviews, and opinions on the drug tecfidera mostly. I was diagnosed with RRMS when I was 16, so approx 14 years ago, because I am now 30. I am now for the first time ever, now finally debating getting on something like tecfidera… But I’m just I guess nervous to take any drugs for it… Can anyone tell me things like, what are the chances this drug are going to make me very sick, like sicker than my ms dose? Is it worth taking, or what are the chances I can just continue to manage my disease the same way I have been this far (more of the natural, hallistic way)?? I know I need to ask my Dr these questions too, but I just want some input from others suffering the same shit. Thanks in advance.

    • Renee says:

      Jake, I have been on Tecfidera for 4 yrs now. I was dx 2013 with RRMS. Was 57 at the time. I am a RN and I am now back to working FT in a hospital ( which I have always worked).
      The only side effect that I have had is flushing from the Tecfidera which I take a 81 mg aspirin to help with. My MS doctor is at UTSW MS clinic in Dallas who I see every 6 mos. and she monitors my labs and checks for any changes with my MS. I for one like the fact that it is a oral medication not an injectable which I would stay away from for me.i have never had stomach issues with this med so for me Tecfidera is working and will not change at this time. In my he last 4 yrs I had one one flare up and that was almost 3 yrs ago and brought on by my inability to monitor myself at that time and what to watch for as I over did it by pushing myself. Now I know better as I had to that high dose steroids for a week. But since then I am doing good like I said back to working FT and continuing with my life riding my horses and every thing that goes along with that. I have learned to monitor myself and what I need to do so I do not over do it. Hope this helps you. Just work with you doctor or find a MS specialist who will openly talk and work with you about and with your MS.

  34. Renee Colbert says:

    No Thanks. I’ve got enough problems without any meds. Started with steroids IV, stopped with Nebumatome IV, a chemo drug. I had 3. I can have 1 more. But I’m already at the bottom. I’ve got PPMS and back problems, in a wheelchair and nursing home.

  35. parisa says:

    I am a 50 years woman who lives in Iran with secondary progressive MS type for more than 25 years and now I use wheelchair to move beside critical physical disorder have you mentioned if there are any drugs in my case
    appreciate a lot

  36. Molly Pitcher says:

    I hadn’t heard anything about this drug~ till my brother with MS called from the hospital as he was being infused. Not cool. He knew I wouldn’t have advised him to do this. Along with everyone else he knows. Along with everyone who has had this infusion it seems…they feel like a truck hit them for weeks after the infusion~ then it’s time for the next one. It seems that isn’t a great improvement.
    The side effects are too bad…cancer, and PML and death. Great. Not me. I’ll just carry on taking my Betaseron like I have for the last 18 years. They’ve got some drugs in the pipeline that fix the myelin damage…even old lesions. Thats a winner in my book. Then if the researchers could figure out what the heck CAUSES MS we might could treat it. It’s always easier to treat a disease than to take a shot in the dark, hoping for the best and making matters worse. Good luck if you are taking or want to take this, but it’s an awful risk you are taking for small benefit. I would take more established treatments before I tried something so dangerous. For relapses there is still IVIG, an infusion, which kicks butt with MS relapses. There’s solumedrol too. Neither should be overused, but still are a better treatment than this new drug.
    When you take something like this that actually changes and remodels your immune system~ that’s big doings. If you have folks that depend on you (ie. kids) it is incumbant upon you not to go for a treatment that might kill you. Your kids would rather have you around with MS symptoms than six feet under.
    Molly P. RN,BAHS. (RRMS for 18 years, Betaseraon for 18 years)

  37. Lola says:

    I just had my first dose of Ocrevus a week ago. I was given premedication, benadryl and Tylenol, along with the prescribed iv solumedrol. Vitals were taken every 30 minutes and I had normal to low blood pressure and only a slight fever. The only other side effect I had during the infusion was a slightly itchy throat for a few minutes. Afterwards, I was just tired from the benadryl. Night of infusion I woke up with itchy feet. Other than that, I’ve had increased energy and I feel great. My mind doesn’t feel as foggy, probably due to the boost in energy. Im actually looking forward to my next infusion in a week. Neuro wants blood tests every 3 mos to check on liver, then MRIs at 6 and 12 months. I’m diagnosed RRMS for 19 years.

  38. KATE says:

    My son’s symptoms were over a three-month period. It started in his back. On and off for two months, my son had pains and aches across the middle of his back. We saw my aunt who is a chiropractor and then my son’s doctor. Both said he was very tight across his back and suggested physical therapy. It didn’t help. That subsided and then his pinky finger went numb for a few days…again, that subsided. A month later, I noticed he was walking funny…that also subsided. Somewhere in the middle of all this, he experienced balance issues, only once though. We knew something wasn’t right. Right before our doctor’s appointment we noticed his left side was a little weak. His doctor confirmed that he was definitely having issues with balance and reflexes. He referred us to a neurologist. That same night, we had his first spinal MRI and then a day later the brain MRI. Both tests confirmed MS. Turns out he has many lesions in his spine that were causing the back issues.

  39. Mark WILLIAMS says:

    I have had the first two infusions of Ocrevus. After both I felt like I had been run over by a bus for 5 days in the evening. Like a bad head cold. Pain in damage shoulder joins and an increase in blood sugar levels from 6.2 – 6.9 to 7.2 – 8.9

  40. Jeff Childers says:

    I have been on it since it was introduced and have regained feeling in areas I have not felt in 20 years. I am definitely in reversal stage and could not be happier. No side effects, probably because I have the most bad ass team of experts not only doing the infusion but my MS Dr. is without a doubt the best in the country. I am already as normal as I ever was but feel great. Lost 35 pounds and have not missed a days work in 20 years, travel every week and loving life. Last MRI just said innumerable lesions but God is great, the almighty healer.

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