Is Ocrevus Right for Me? So Close, Yet So Far

Is Ocrevus Right for Me? So Close, Yet So Far


History has been made because of a major breakthrough for multiple sclerosis sufferers everywhere. Ocrevus (ocrelizumab), by Genentech, has been finally approved by the U.S. Food and Drug Administration. It is the first drug treatment that includes my type of MS, primary progressive. This is what I’ve been waiting for. It’s groundbreaking, innovative and hopeful — but is it right for me?

Don’t get me wrong, I am excited, even ecstatic. I feel PPMS is no longer the child left out of the game, that those of us with this rare type of MS are not ignored! I am hopeful, but at the same time I am apprehensive. Will the possibility of slowing my MS progression come with a price — possibly that of adding more health concerns to my already full plate?

According to a statement from one of the nation’s leading MS clinics, the International Multiple Sclerosis Management Practice (IMSMP), there are “some serious concerns” when deciding whether to use Ocrevus as your MS treatment plan.

The optimistic side is a possible 25 percent decrease in progression with use of the drug for PPMS patients, and an even better decrease is possible for relapsing forms of MS.

However, I remain cautions because during clinical trials of Ocrevus, there was evidence of cancer and serious infections.

I have read of some promising results for younger patients, but for older patients such as myself, not so much. I have searched to find the criteria to be considered for Ocrevus treatment, and there’s not much of it on the Internet.

I may be fretting over this decision without reason. The decision may have already been made for me. So I will wait to talk to my neurologist and see if I meet the criteria for treatment with Ocrevus.

My situation is that I was diagnosed with PPMS in 2010, and I am over 55 years old. I walk with assistance for short distances and use a manual wheelchair for longer excursions. I have been on the high-dose biotin protocol for one year with some noted improvement.

I would love to hear from those of you in my situation and what your thoughts are about this groundbreaking treatment. We are all in this together, and the sharing of information is a very powerful tool.

***

Note: 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 other 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. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

46 comments

  1. JK Collins says:

    I am also in the older age bracket. At 64 years of age with a history of Hepatitis B during my college days (1971) I’m advised not to touch the stuff. Looking at the data regarding serious infections and tumors, I’d say keep that jury in the jury box until more evidence is presented that it is safe.

  2. Leslie says:

    I am 45 years old with SPMS, so I will not pretend that I understand your experience and the desperation you must feel. I have my own. It is very difficult to see your life slipping away and not be able to do anything. However, MAJOR potential side effects, long term effects unknown, $$$$$, and a POSSIBILITY of ONLY 24% decrease in progression. I feel extremely sad that this is what we have to get excited about. ? I believe that the lifestyle changes I have made have at least equalled that statistic, without the risks. I hope you get the answers you are looking for. We all deserve SO MUCH MORE.

    • Debi Wilson says:

      Well said Leslie! Even though I am so glad PPMS has a treatment, so sad for the risks! Thanks for your comments! Debi

    • I wish there was “like” button for your answer, I’m right there with you! The stupid, redundant Pharmaceuticals they continue to roll out as the next REAL answer , makes me want to retch ..I feel like they ALL THINK WE’RE STUPID!

  3. Ken says:

    I’m with you. Diagnosed in 2009/10 with PPMS, 61 yo, and use assistance (rollator) for ambulation. Biotin, Vitamin D, etc. Progression continues and like most with PPMS, I’ve watched this drug for a while with the same concerns. Unfortunately, the risk vs. reward remains questionable. If it stopped progression in 24% of patients treated, that would be different, but it did not. The best hope is a 24% reduction in progression with the worst scenario being no change in the progression, plus cancer, infections, herpes, etc.

    One thing that I’ve learned is that the MS population is very knowledgeable about research and really do understand it (thank you Al Gore for the internet). This probably frustrates some Neurologists, including mine, when we bring folders of research articles to our appointments. The current MS and cell research that is ongoing is amazing, but anything useful is years or decades away. Given our age and progression, clinical trials are limited and will soon not be an option at all.

    With minimal treatment options, I’ve considered HSCT in Russia. Like Ocrevus, the risk/reward is questionable, and the published data suggests that it does not work for older PPMS patients without inflammation, but the anecdotal outcomes are impressive (although anecdotal and not data based). I’ve looked at all the HSCT sites and this one seems best for me so with no other options, I narrowed it to HSCT in Russia or Ocherous. They are mutually exclusive so it’s one or the other.

    In summary, I don’t have a recommendation for you or myself. Just wanted you to know that many others are in the same situation trying to decide what to do next. Whatever you decide, I hope that it helps.

  4. Jerry says:

    I am excited about this new treatment. It’s one of the initial breakthroughs! Results obtained from this drug treatment will lead rapidly to new and safer treatments. Every thing has to have a starting place and builds from there! Remember there wouldn’t be Jet transportation today without the Wright Flyer and that first 120ft flight!

  5. Frances Robson says:

    I also have PPMS. I am going to pass on this drug and continue to follow the OMS protocol. Dietary and lifestyle changes are more hopeful and don’t carry any risks.

  6. merlin says:

    It is interesting to see what people think about Ocrevus,we all have to make a decision on this,I am seeing my Neurologist tommorow so we will see.I am 65 years old and got diagnosed in 2001 so my time is slipping away but I have faith in modern medicine,Merlin

    • Debi Wilson says:

      Yes it is exciting news Merlin! I can’t wait to talk to my neurologist also! I am excited to see what his thoughts are on the safety! Thanks for your thoughts! Debi

  7. David says:

    The development of Ocrevus is both exciting and scary at the same time. I am 71 years old and was diagnosed with PPMS in 2000. I am totally wheelchair-bound and need assistance with just about every task that I perform. I too am awaiting to see my neurologist and to find out if any of my disability can be improved or altered. That may be the deciding criteria for me whether to use Ocrevus or not. Good luck to everyone in making your decisions about Ocrevus.

  8. Deborah Davidson says:

    I am concerned about the the infusion part! How do you sit that long for an infusion without urinating after drinking 3 glasses of water and havING an infusion for 3 hours? I thought weak bladders was part of the symptoms of M.S.!

    • JM says:

      I had IVs monthly for 2 yrs when I had Tysabri infusions. Restrooms were close by, I walked with my IV pole myself.Nurses assisted those who needed help.

      • David says:

        I drug my IV pole to the restroom today while receiving my Ocrevus infusion. I am willing to gamble and hope it helps. I am not wheelchair bound and do not need assistance for short distances (less than a mile). The heat is what really hampers me. My hope is this is worst case scenario.

        • Efraim Rivera says:

          David, I have taken your same gamble, I am not wheelchair bound and get along pretty well, just cannot do long walks hence the reason for trying…Ocrevus… I am 67/68 in Jan, dx at 61,,,

  9. Deborah Davidson says:

    I have had M.S. for 50 years! I am worried how I can sit for an I.V. for about 3 or 4 hrs. With a weak bladder! I am still walking.

    • Debi Wilson says:

      That is a valid concern Deborah! Maybe we would be able to walk around like with other IVs. I’m not sure, that’s a good question for our neurologists. Thanks for your comment! Debi

  10. Gary W. says:

    I must say everything you read about this new drug is a bit confusing, for some people it did nothing and for others it was a near miracle, so for us PPMSERS what do we do? I am in a clinical drug study with the N.I.H.[ Drug name is Idebenone] and it has done nothing for me also tried stem cell treatment with purified bone marrow from me with no results, I was wondering if anyone has tried Ann Borochs method eliminating the bad yeast or gut bacteria with any results? I am still very pro active in seeking the latest and greatest. Going to see my neuro in two weeks to discuss the ocrelizumab situation good luck to everyone and Iwill stay in touch. Gary W

    • Debi Wilson says:

      Thanks for your thoughts Gary! I haven’t tried Ann Boroch’s method, but I am looking into that. I have heard good things. I hope you find something that works well for you and please do keep us up-to-date! Debi

  11. Carmela says:

    I too have had PPMS for over 20 years and am 61 y.o. I am not sure this is the best tx for me. I feel that biotin may give me the 24% decrease in disability with fewer side effects. I tried to get into the PPMS Ocrevus study but they only allowed patients 55 and younger and at the time and I was 56. No exclusions would be made. Also the PPMS patients enrolled were younger and had the disease for 5 years or less. I am still able to get around with AFO, knee brace, and cane/rollator but it is exhausting. I appreciate the risk the company took to test this in PPMS. Maybe it will help someone solve the mystery as to what causes one form of MS vs the other. If I had RRMS, I would definitely take this!!

    • Debi Wilson says:

      Hi Carmela,
      I appreciate the research and development of Ocrevus as well. But I also share your concerns. Biotin has been good for me and I will see next month on an MRI if there is any change. I wish you the best, Debi

  12. Mara Rost says:

    I am also hesitant about trying this ocrevus. I am 62 years old with a diagnosis of PPMS in 2006. I am considering HSCT probably in Russia or Mexico. I find it scary that there are so many possible side effects such as cancer, herpes and other infections with this drug and minimal % of reduction in progression.
    I’m just not sure the risk is worth it.

  13. Scott says:

    The sad thing is Ocrevus is actually Rituxan that is getting ready to run out of patent because it has been around for 20 years. When the doctors and Pharma realized that it might help a very small subgroup of mostly young, recently diagnosed primary progressive patients they halted the original trials and called them flawed. That was six years ago or so. They then started new trials with very strict criteria, very strict, with the motivation of getting a new patent on and old drug. So what are the chances that the 20% reduction in progression they gained are not actually primary progressive patients? If you ask me, I believe the second round of trials were flawed. The motivation to get a new patent on an old drug to sell it three times the cost to the customer base of some 400,000 MS patients at $65,000 a year is undoubtedly a strong one. My prayer is that Genetech actually uses all that profit to find something that works because I believe this is an illusion that will come to light over the next two years. Sorry to sound so pessimistic, for I am only 5 years into a diagnosis primary progressive and was denied the opportunity to be in the Ocrevus trials because I had no inflammation in my MRIs and now 51 years old. I force my neurologist to allow me to try Rituxan by saying the oath ‘I will do no harm required him to allow me to take Rituxan until Ocrevus got here. so far no difference in progression. He is also the one who informed me that into years the hype would be over. Then it would become mostly a relapsing remitting drug. This does not stop me from trying, for with anyone with PPMS, we are desperate.

    • Debi Wilson says:

      Thanks for your comments Scott! It’s good you are taking an active role in your treatment. That’s all any of us can do, is figure out what is best for ourselves. Best to you, Debi

  14. bonnie says:

    Gary W. Where did you go for the stem cell treatment, and around how much did you pay? Was there other people their that you might of meet an talked to, with stories of it working for them. thank you

    • Gary W. says:

      I went to progencell in Mexico it cost 17000.they took bone marrow from me purified it and put it back in,sad to say no improvement and I had this done five years ago.

      • Cynthia Phillips says:

        Gary: You were scammed. What you had was not hsct! Hsct is
        with chemo! Yours was not hsct. Hsct is done at Clinica Ruiz in Peubla Mexico.

  15. Debbie Ramsey says:

    I am 44 and this coming May it will be 20 years with this MonSter. I am sorry to all the PPMSers. I am ever worsening RRMS or SPMS. This is my last hope for right now. No other drug works for me. I see my Neurologist on the 14th. I have no balance at all. Sometimes I need help on and off the toilet. I have gone over a week without a shower. PT does not work for me right now just makes me weaker. I guess we will discuss my MRI on the 14th and I had had the Hepatitus B vaccine so it looks like I am going to go on Ocrevus. I have to have a 2 month flush out from my Tysabri but since I cannot deal without DMD’s, I will be put on once a month steroid infusions which can only take one each month because it wreaks havoc with my Diabetes that is genetic. Thanks family, and I will have bathroom problems seeing that I cannot empty my bladder and I self cath. Yeah ME God Bless you everyone, and Debi my name is Debbie too and my best friend used to spell it Debi all through high school.

    • Debi Wilson says:

      Hi Debbie!
      I’m sorry to hear about all you are going through I hope Ocrevus works well for you! Please keep us posted on how you are doing! Us Debbie/Debby/Debi’s need to stick together!:)

  16. I appreciate all the feedback! I am 64, soon to be 65, and my neurologist just prescribe this for me. I was misdiagnosed for at least 30 years. Since it was misdiagnosed for so long, and therefore not really sure what I had, I was originally on Avonex, then tecfidera. In looking at my history, my neurologist is pretty sure I have PPMS.

  17. Joe says:

    Wow! What great comments from everyone. I’m 56 and was diagnosed in 2001.
    I need a walker to get around and a wheelchair for longer distances.
    I’ve tried the stroid IV 3 times, Copaxzone, Plasmapheresis and another self injection drug that I can’t remember the name. Nothing has worked for me,the steroids didn’t help me at all. I’ve been searching for information and results on this new drug and I not have found anyone with PPMS or SPMS that has anything good to say about it. (Early yet for true results). The only good responses are people that don’t say if the have RRMS or PPMS. I have tested positive for the JC virus but I was told my count was low. (Have to find out what they consider low). My doctor wants me to try this but I don’t think the reward is worth the risk at this time. I think I’m going to wait for this drug to be administered for a while and look at some results at a later date. All the research I did and didn’t know 24 per cent is all I’m looking at. Thanks so much for the info.
    Good luck to everyone and try to enjoy life, don’t just live the life you have.

  18. Debbie says:

    Am trying Ocrevus for primary progressive, simply because there is nothing else. If nothing positive happens, figure that it can be discontinued. Have also been on high dose biotin for over a year with limited results. Better than nothing, so will stick with it. Was diagnosed in 2009, at age 50, but it should have been caught in 2008. Clearly, had lived with MS for years by then, looking back. Follow a pretty low fat diet, as have been vegetarian for nearly 44 years, but do eat some dairy. Look at the MS Gym. Some people feel that the exercises have helped them. I have yet do actually do them. Google MS Gym or join the Facebook group. Need to move more. Also need a walker outside and a wheelchair for long distances. Can walk around my apartment still. Biotin is worth trying. Agreed that Ocrevus is probable more hype for PPMS than hope, but am still trying it. My MS subspecialist neuro had me on Copaxone, LDN, Mitoxantrone and Gilenya, all did nothing. Pulsed steroids helped slightly but mostly did damage. Yes, it IS beyond frustrating to have zero treatment options.

  19. Bill says:

    I was had the initial two part Ocrevus infusion back in June. Over 5 hours each time, not including a long commute. This is half the yearly dose and after my insurance selling the drug from their own pharmacy and marking it up, the hospital charges and two infusions, the total bill was just under $108,000. $65000 a year? No way. With the Ocrevus copay assistance, I still had about $1000 out of pocket they refused to cover. 5 months later with absolutely no positive results and accelerated decline, Ocrevus in my opinion is all hype, Rituxan all over and not worth the risks or effort. Primary progressive MS is bad enough without these false breakthroughs. I am 39 and have no hope for this drug at all and will not continue.

  20. Nancy Church says:

    I have had PPMS since 2006. I am 63. I have had the first two 1/2 infusions and one full one in Feb. I feel like it made me worse. My doctor says its the disease that made me worse not Ocrevus. I was on copaxone before the infusions so I don’t know if the progression was from going off that drug or the course of the disease like she said. But I have decided to not go for any more treatments at this time to see how I do. I am trusting in the Lord for my healing now, holding on to that mustard seed. I know God can work through Doctors and medicine so I am still open to His direction if it goes that way.

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