Deciding if Ocrevus Is Right When You’re Over 55

Deciding if Ocrevus Is Right When You’re Over 55

As a 61-year-old woman diagnosed in 2010 with primary progressive multiple sclerosis (PPMS), I was overjoyed when the U.S. Food and Drug Administration (FDA) approved the therapy Ocrevus (ocrelizumab) in March 2017. Because Ocrevus is the first treatment approved to possibly slow the progression of PPMS, the FDA’s green light offered me much-needed hope.

As I write this, in August 2018, I am sharing information about Ocrevus that comes from neurologist visits and my own research. I am optimistically cautious in a lot of things, especially medicine, so I have not yet tried Ocrevus.

I’m not writing to sway anyone to make a decision either in favor or against Ocrevus treatment. I know everyone’s MS situation is unique, and I would never attempt to do so.

If you follow my column, you know that I have seen seven neurologists over the last 10 years. When I asked the sixth neurologist about Ocrevus, he said I could be on the treatment plan, but not for more than five years due to my age. He reasoned that it would be difficult on my older body and it would leave me vulnerable to infections.

I recently started seeing a new neurologist who seems to be very knowledgeable and to have my best interest at heart. I believe she really wants to help me.

Join the MS forums: an online community especially for patients with MS.

She is very upfront about my MS, and her advice to me about Ocrevus is that “the risks may outweigh the rewards.” The main determining factor, again, is my age. This neurologist, unlike the last, offered several valid reasons.

She said that Ocrevus has been shown to work best when lesions are active and enhanced, most likely at the time of diagnosis. She also explained to me that as we age, our immune systems can weaken.

Because PPMS already weakens my immune system, and because Ocrevus depletes certain B-cells, so it could further compromise my immune system. That could leave me vulnerable to dangerous infections.

It was my age that led me to question Ocrevus when I wrote the column, “Is Ocrevus Right for Me? So Close, Yet So Far,” in April 2017. While researching for that column, I studied the Ocrevus clinical trial results and noticed that the age group tested in the trial was 18-55.

My neurologist recommended that I wait for more data to be published. She also mentioned that remyelination therapies are on the horizon. To me, those sound very promising!

I am accepting her advice and passing on Ocrevus for now. That is because, at the moment, there is no cure for any type of multiple sclerosis. From what I understand, Ocrevus may offer slower progression, or it may make my situation much worse. I take calculated risks in many things, but with Ocrevus, the risks just don’t add up to something positive for me.

Please share your own experiences with Ocrevus in the MS forums!

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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.

60 comments

  1. Wanda Tylicki says:

    I am going for my 2nd treatment and I could walk 6 months ago. I asked if this is making me worse. They want to go ahead with 2nd dose.

    • Debi Wilson says:

      I’m very sorry to hear that Wanda! The Doctors must feel it is a temporary side effect, since they are proceeding? Best to you,Debi

      • Marilyn says:

        Debi, Thank you for your input. I did Lemtrada. Booooo. Made me much worse. At 57, I thank you because a new neurologist suggested Ocrevus for me. This truly makes me step back and think. Thank you again.

        • Debi Wilson says:

          Your welcome, Marilyn!
          Everyone is different, but, I would definitely discuss what my Doctor said with yours. Good luck to you and thank-you for your comments! Debi

    • Anita says:

      Well, after reading the comments, I will hold off on O. I am 59 with ppms diagnosed 3 years ago. I am still walking, slower but still walking. I have had a few falls but nothing major. Everything else ok. I will continue to eat healthy, try and lose a bit of weight, exercise and pray for the best. Best to all of you…

  2. Gary Levene says:

    I started Ocrevus a year ago at age 64. I am having my third infusion later this month. I am not able to weigh in on the benefits, due to the fact that progress/slowing of symptoms is impossible to quantify. PPMS is the type of MS I have, and I have presented absolutely zero side effects from the Ocrevus infusions. I agree with Ms.Wilson, everyone’s MS situation is unique. We are truly “fearfully & wonderfully made”, and we also all process what is happening to us physically in different ways. Do not abandon hope, any of you reading this! Gary Levene

    • Debi Wilson says:

      Hi Gary, Thank-you for sharing your experience. This is exactly what we need to hear, the good and the bad.I hope more people share like you did! Then we can evaluate the information and decide what course of action is best for ourselves.
      You are so right no one should ever give up hope, hope keeps us going.
      I am very glad you are doing so well on Ocrevus and please,keep us posted! I feel you will be a success story that will inspire us all! Best to you! Debi

  3. Jeff Schmidt says:

    I’m 51 male. Tried copaxone, tecfedara, rebiff, finally diagnosed ppms. Was in a clinical trial for three years. That’s not for people who work for a living! Trial scrapped laquinamod didn’t do anything. Has taken me 9 months to get on ocrevus. I have finished my first dose a week ago. Won’t know if it works for 6 months or so, but I’ve got to try something to slow this down!!!!

    • For Lisa says:

      Hi all! I am still very excited about Ocrevus. It was great to hear that finally there is a drug to help those suffering with progressive m.s. My wife started it in early 2018 and last month they took her off. She had an upper respiratory infection which went away with antibiotics, but the second bout out her in the hospital with pneumonia and she came home with a tracheostomy. I am only telling this because I feel that as excited we are about each new treatment, we can’t allow it to out weigh its benefit. I am bummed because I am hopeful for you all in Octavia and wanted my wife to stay on it. I hope that her experience is rare. I truly do. If you are noticing add infections, please let your neurologist know right away because the hospitalist at your local hospital will not know what Ocrevus is. I’m hopeful that her experience will not be anyone elses! Best wishes.
      For Lisa

      • Debi Wilson says:

        Thank-you “For Lisa”, for sharing and for the great advice! I’m sorry your wife had a hard time, I wish you both the best! Debi

  4. tim wick says:

    i was going to start on the 8-14-18 they forgot to tell me i had to stop tecfidera for 6 weeks first oh yea ok she was talking about maybe only the first infusion and see i got the vibe there may be no sense in me taking anything at this point at 62 yrs and maybe shes right she was looking at fresh mris and labs maybe you are right in waiting makes me rethink what i am gonna do Thanks for sharing the info it sure helped me think again takes one to know one Thanks again

  5. Senator says:

    I am 65yr old male with PPMS, waiting for 3rd round of Ocrevus. I used to be on Solumedrol infusions of 5x 1000mg every 3 months. Ocrevus took the place of this, alleviating pain in feet and calves and gaining strength in legs. Being able to stop infusions of Solumedrol was in itself a huge benefit. O also gave me the ability to sweat again so I can tolerate heat better, take warmer showers and do some chores without getting so fatigued. Also calming my jittery hands so I can write legibly again. For me O is doing great and I`m glad it came to market. I do read here and other web sites I am on, that some people get adverse reactions and that is a shame. I personally am glad that a drug company is looking at the area of MS that has the fewest infected people, and that possibly this drug may help provide answers to a cure.

  6. Jan says:

    I am a 55 yr old female. Did my one and only Ocrevus infusion 1 yr ago. I was optimistic but that was short lived. My walking and dexterity began to decline after infusion so I decided Ocrebus is not for me. I did not have any side effects.

    • Kara says:

      Last year, at age 54, I had the 1st two infusions of Ocrevus. I had a decline in my walking. I used to only use a cane outside the house. Now I hold on to everything. The fatigue was terrible after the infusion. I had a sleep study and found out that I have sleep apnea. The CPAP machine helped immensely. I think you are smart to wait and see before you proceed with Ocrevus. I think the majority see a benefit, but there are some that have worsening of symptoms. Best of luck!

    • Jim S says:

      I did the same. I took first 2 doses about a year ago. I’m 65 year old male and saw no improvement, my walking worst than ever. Had no side effects but Ocrevus was way too expensive. I’m only taking medical marijuana now. That seems to help with pain and spasticity. Good luck to all.

      • Katherine says:

        Hi Jim did you look into Patient Assistance with Genentech (Ocrevus) ?? They are covering what my Insurance would not (although my Insurance been much improved since the Copaxone failure) – Pleas call them – if your interested of course they have great programs to help patients !! Good luck to you – kt

  7. Dottie McNee says:

    I am so thankful that everyone is sharing the pros and cons of ocrevus 🙂 I was diagnosed in 2014 at the age of 53. I did a short stint on Tysabri and then was on Gilenya for two years with many relapses and taking many steroids. My neurologist also put me out of work in December of 2016. He spoke to me a lot about the Ocrevus and when it finally came available and my insurance company approved it last October of 2017 I took the first two part infusion. I took my first full infusion in April and I’m scheduled to take my next infusion in October. I have only positive things to say about this infusion as since I began it in October of 2017 I have not had to take any steroids or had any relapses. I have been walking with a cane since I’ve been diagnosed and I still do but I am convinced that hopefully in the future I will be able to stop using it safely. Yes there are risks to every type of medicine that is out on the market and I realize and feel bad that some people are unable to take it and don’t benefit from it. I look forward to the future with all the research going on that hopefully one day additional treatments will be available or even a cure 🙂

  8. katherine.tucker says:

    I am 60 years old and have PPMS – Copaxone failed me miserably and oh my the side affects were the worse! My Neurologist gave me information about Ocrevus and I am waiting now for my next full infusion in a few months (at that time- I have minimal side affects and only a day or two after .. I work full time, use a cane for long distances or uneven surfaces. I used to work in Medical Research .. and currently still in Health Care although a different capacity due to my disease.. I am ok with that! Yes I may lose some B cells but still have T cells which run the whole show! I take 1,000 units of Vitamin D3 daily and 2 womens’ vitamins as well as Biotin (I haven’t lost any hair in these last years!). I continue to find ways to exercise and eat healthy as I can.. getting enough rest well we all know how that goes .. I am very excited about O.. I believe this is my treatment .. that will help continue a viable productive life.. I have great support at work – friends and family and my Medical Team.. I feel lucky to have so much available .. and looking forward to the next breakthrough …We all have to find our path whatever that may be as we are all “Snowflakes” … we are all unique and wonderful.. Peace kt

  9. In the spring of 2009, my husband was diagnosed with diffuse large B-cell Non-Hodgkin’s Lymphoma in his left maxillary sinus. He was treated with 3 rounds of R-CHOP (“R” standing for Rituxan) chemotherapy followed by 20 days of radiation to 7 sites around his left eye. During the radiation, is was noted that he had developed a slight foot with his right foot. Upon completion of his treatments, he deemed to be in remission, however, his weakness and foot drop were so severe that he couldn’t return to work. Within a couple of months he also developed severe bladder and bowel problems.

    At first, it was thought that his problems were due to the cancer and its treatments but as things worsened an MRI was done which showed some lesions in the brain and one in the brain stem but we were told that it was inconclusive. Since then, he has had numerous MRIs which showed no changes and he was deemed “stable” even as his symptoms worsened. Over the last 9 years, the weakness spread up his right leg to his right hand and arm along with increasing fatigue, but, thankfully, with no pain. However, the last MRI done a year ago showed 3 new lesions and his new neurologist now believes he has PPMS and has suggested Ocrevus to treat it.

    Like everyone else, after researching it, we have concerns about the side effects, especially with Tom’s previous cancer. Has anyone else developed MS following cancer and its treatment? Would love to hear from others in our situation.

    • Debi Wilson says:

      Thanks for sharing, Kathy! I hope someone here can help, and give you the answers you are looking for. Best you and your husband, Debi

  10. Being PPMS,had 3rd Ocrevus infusion at 55 last week. Having no side effects is great. Bit better on walking. Chronic nerve pain in L4, low back area is gone instantly. Seems after 4months it starts to fade off. Makes me feel better. Im satisfied.

  11. Steve says:

    I am a 60 year old man. I just had my third Ocrevus infusion this past week. I have had a few minor side effects. I have not seen any improvement hoping it will slow progression but who knows if it is. I don’t know if I will continue with this or not.

  12. Tom Fisher says:

    I am a 70 year old male probably with ppms (my “episodes” in the early years were either very mild or not really relapses so it’s probably not secondary progressive). I will see my neurologist in a few weeks presumably to schedule my 3rd Ocrevus infusion. Over the last 14 years I’ve tried 4 other disease-modifying drugs which seemed to have no discernible effect on my slow decline. My impression is that Ocrevus has helped. But it’s been a slow roller coaster. Four months ago, I concluded I was walking better and felt better. Two months ago I was back to my baseline. Over the last 6 weeks I’m back to feeling stronger and better. So if I have a choice, I’ll continue Ocrevus and hope I dodge any side effects. My goal at this age is simply to sustain a good quality of life. Hope this helps.

  13. Garden lady says:

    Thanks for this information. I’m currently on Copaxone, after previously trying Beta seron, and Tysabri. Just not enough real estate to continue the injections. My Neuro is also offering Ocrevus ( I’m progressive MS), and like you have been trying to understand if this is a good fit for me. I came to the same conclusions that perhaps the risks outweigh the benefits for me as well. Plus, I read this too.

    http://www.msbrainhealth.org/treatment-decisions/article/efficacy-of-ms-drugs-is-linked-to-age

  14. Katherine says:

    I am 60 years old and am thankful that Ocrevus was approved for PPMS – I have very few side effects and those only for a few days afterwards. I do walk with a cane for long distances or uneven ground .. I work full time ..am always looking for a way to exercise .. I take my Vitamins and eat healthy .. I feel so much better taking Ocrevus – I was on Copaxone with so many side effects and my symptoms exacerbated and more brain / spinal lesions .. I am truly excited about Ocrevus – I believe this is the right treatment for me as I feel so much better! We are all “Snowflakes” we are all unique and we are all wonderful and Our journeys differ even when they are the same…. I wish you all better health – Peace. kt

  15. Roberta Sloniker says:

    I am 77 and will have my third infusion in November. I have PPMS. No side affects and my balance is a little better. It’s nice to dress using both hand again. I have had no infections and was exposed to flu repeatedly last winter and remained healthy. I’m willing to take the chance because my brain has shrunk significantly. The prognosis is dementia and I’m hoping to slow the progression. I was diagnosed in 1994 and this is the first treatment available and it gives me hope.

    • Debi Wilson says:

      That is amazing, Roberta! Thank-you for sharing your story, I am very happy to hear you are having good results! Debi

  16. Wendy says:

    I am 77 years old and just finished my second dose of Ocrevus..I was diagnosed with PPMS at age 75. I currently have 2 neurologists. One in San Diego where I was diagnosed and 1 that is local. I have not had any side affects from the infusion. Both neurologists have had many patients in their 70s with no side affects on Ocrevus. It has helped my walking a bit but I have been told it could take up to a year to show more progress in walking. The only other MS medication I have used is Ampyra which has also helped with my balance. I don’t really suffer from any of the many MS pain, spasticity, heat, or fatigue problems which I am grateful for. I do have a terrific support group in my husband, family, and friends. I do use a Bioness to help with the foot drop on my right weak side.

  17. David McLaughlin says:

    I am a 57 year old male diagnosed with PPMS and I have declined drastically over the past two years I jumped at the chance to try Ocrevus, it took six months from the date my neurologist prescribed Ocrevus till today my first infusion. I wasn’t prepared for the approval process things like being tested for TB here if your over 50 you have to be tested twice that took three weeks to complete, I had to update all my immunizations, funding was almost three months until finalized. It was definitely not a here’s your prescription go to the pharmacy and get it filled scenario it was a lengthy process for me to get medical clearance for the procedure.

    I can’t comment yet on any benefits but would be glad too in the future.

  18. Jeff says:

    I’m surprised at so many ‘senior citizens’ commented on this post! At 66, diagnosed in 1977, I am starting my second year on Ocrevus. No, it didn’t make me ‘young’ again. No, it didn’t ‘cure’ me. But it seems to help, and realistically that is important.

    My Neuro, the director of an MS Center, strongly encouraged me to continue with it until “something better comes along”. With the money at stake there will be new stuff coming down the pipe all the time. Until then I’ll use what’s available. It does help.

    I’ll take his advice!

  19. I WOULD HAVE LOVED TRYING THIS, BUT BECAUSE I WAS ON ANOTHER INTRAVENOUS FOR A YEAR MY VEINS STARTED TO BLOW. NOW I CAN’T DO THEM ANY MORE. WHEN I GO FOR BLOOD WORK, THEY HAVE TO USE BUTTERFLY NEEDLES TO GET MY BLOOD. NOT YELLING I NEED THE CAPS FOR EYE ISSUES. NOW I HAVE TO TAKE PILLS. SO SAD, HOPE THIS DOESN’T HAPPEN TO ANY ONE ELSE. GOOD LUCK ALL.

  20. Terri says:

    I am a 64 year old female with PPMS with a relapsing form of MS. I have had MS for 35 years. When I was diagnosed in 1984, there were no disease modifying drugs. I worked as therapist for almost 25 years. I was in most of the clinical trials that introduced injections to slow MS leisions and to fight the B and T cells overproduction. I was in the clinical trials of using Rituxion (which was the precursor to orcrevus). I have had some very bad relapses , paralyzed from the neck down in 2007. Got better. I have residual right side weakness. I have found Orcrevus to be life changing😊. Very few side effects. I am still walking and enjoying life to the fullest. I absolutely have MS, and live with the very same symptoms as others…fatigue, muscle weakness. I exercise my body and mind everyday. I also use medication to fight fatigue, attention, and mild depression. Everyone’s journey with MS is different. We MS warriors are survivors and thriviors.

  21. Craig Pritzlaff says:

    I began Ocrevus therapy in October 2017 and am scheduled for my third infusion this coming October. I am a 56-year-old male diagnosed with relapsing remitting multiple sclerosis (RRMS ) in 2002 and secondary progressive MS (SPMS) in 2013. Before Ocrevus I have tried Copaxone, Avonex, a combination of both Copaxone and Avonex various alternative therapies, no therapies and Tecfidera, all with no detectable effect. After my diagnosis of SPMS I began Tecfidera, then switched to my current neurologist in 2016. He highly recommended I go on one of the newer biologics. when I asked him about Ocrevus he said he knew of no severe side effects nor any instances of PML. in my own research on Ocrevus I did find side effects indicating the possibility of infections and particularly upper respiratory tract infections. Although Ocrevus had just been FDA approved he said he knew of people who had been on it for four years and were getting some positive results. However, he couldn’t tell me what the positive results were. anyway, I decided to try it. After about a year I can report no improvement, aside from lessened urinary urgency, and no side effects. my condition continues to worsen.

    Thanks to all for sharing, it is a big help as I consider whether to continue the therapy.

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