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I’m not yet 52, have RRMS, and I began Ocrevus on Dec. 22, 2017. My first full dose was this June 22nd. Thus far I’ve had no side effects, no infusion reactions, and no issues with illness or infections. In fact, I was exposed to influenza and did not become sick. I do have more energy and stamina – I simply feel better and am enjoying a better quality of life. My son is 31 and has been on O since the Opera clinical trial, with great results and no complications / issues. I realize that every person, every body, and every case of MS is unique but for me Ocrevus has been a blessing and I believe it will continue to be so. If I begin to have challenges with illness then I will certainly weigh the pros and cons again and research any new treatments. For now, I am happy with Ocrevus.
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I really enjoyed reading about this topic. As most with PPMS, I was hopeful about Ocrevus. I made an appointment with a new Neurologist member of the local MS Center staff who seems to be the go to person with questions about Ocrevus. She was extremely knowledgable and brought to my attention facts that I overlooked in my research on this drug. Number one was that that the oldest person in the clinical study was 55 years of age. I’m turning 70 next month and of course with older age one is more susceptible to infection which brings up the second fact, that Ocrevus decreases certain B cells (part of the immune system) making one concerned about infection. She also emphasized the fact that in the study for PPMS that showed significant slowing of the disability progression, there was only a 24% less likely to have disability progression for 3 month and only a 25% reduced risk of worsening on the 25-foot walk.
I am still weighing the benefits and risks, but with what I have learned from my research and reading this forum, I probably will forego the treatment at least for a while. I certainly hope that those of you that proceed with the treatment that your endeavor will be successful, and I will be awaiting to hear ,your assessment.
By the way I am glad I have found this forum. I think that it will be instructive and beneficial and I will be exploring the many forums.
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Hi Mahlon,
Have you asked your neuro about Lemtrada? It attacks selected B and T-cells (Ocrevus only attacks B-cells). My 70th birthday was ten days ago and I was DXed with MS in 1980. Though I’ve never officially been changed from RRMS to SPMS, I haven’t had a relapse (exacerbation) in, I’d guess, over 15 years. However, I’ve steadily gone downhill to the point where I use two canes and an FES for short distances and a scooter for longer.
I’m four months past the second round of Lemtrada and, though it’s been a roller coaster at times, I think my symptoms have improved a little.
I’ve written several columns about my Lemtrada “journey,” which you can find if you go to the main MS News Today website and scroll through my column: The MS Wire.
Please let us know what you wind up doing.
Ed
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Hi Mahlon,
How are things going with you? Have you made a decision about Ocrevus yet?
BTW, I like the picture of you in the saddle. I got back on a horse, a few years ago, for the first time since I was a kid and worked with a riding therapist. It made me feel better physically and mentally. Do you still ride?
Ed
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I am now 2 years into treatment with Ocrevus. I do well with the infusions and have no side effects. I haven’t had a relapse in this time and although I may have a symptom once in a while they are usually short-term and mild, triggered by temp changes, stress, etc. I just had brain and thoracic MRI’s. I have no new or active brain lesions and the thoracic is stable – most of the original lesions are no longer active and there are no new ones. My son is about 6 years into Ocrevus treatment and doing well. Like me, he occasionally has symptoms but no relapses and his MRI’s are good. I am 52. he is 33.
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Hi. How old were you when you discovered you have MS?
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Yes, I have had 3 doses of Ocrevus (the initial starter 2 doses and one full dose). The first infusion for PPMS was done at age 59 1/2. The first full dose a week after turning 60. I have also been taking high dose biotin for about one year. My next scheduled in Ocrevus infusion takes place in December 2018.
At that time, I will reevaluate my decision. Thank you for starting this discussion and for your very informative articles.
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I discovered 5 years ago when I was 22. I started the treatment right now because I had a baby but basically I didn’t accept to be sick. But now I start thinking about the future and I’m scared. I’m scared not to be able to take care about my daughter for many years. So I just wanted to know how many years I can live my life normally. What’s your experience? How do you live your life after many years with MS?
Thank you
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Valeria,
I was diagnosed when I was 32 years old. Our son was only 2. I’m now 70, our son is 39 and we have grandchildren who are 2 and 4 years old.
I worked, full-time, until I retired 5 1/2 years ago. I’ve traveled all over the world for work and for pleasure. I now use a cane and a scooter to help me get around but my life has been good and continues to be good.
MS is not the end of the world. It effects everyone differently but you can, also, live a good life.
Ed
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I turn 65 in another 8 days. I have PPMS, dx’d in 2001. My neurologist seems indifferent so I saw another for a, well, first opinion and he said he wouldn’t recommend it for me for a list of reasons, my age and disability level among them. I’m in a wheelchair, have no bladder or bowel control and my left leg seems to be a dead weight. I hope I am not beyond hope, but it looks like symptom management is all anyone can help me with.
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Hi Olivia,
I’m sorry to hear how much MS has taken away from you. However Ocrevus, Lemtrada and Tysabri are three meds that hold out some hope for stopping progression and, in some cases, reversing symptoms. I don’t know if it will happen for you. I’m 71 and began Lemtrada treatments at 69. My disease isn’t as advanced as yours, but I think Lemtrada has helped my bladder and bowel problems a bit. It may be worth raising the possibility of treatment once again with your neuro.
Ed
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Hi again! My side effects were just minor skin infections. But, Ocreveus didn’t help me. I read on one of the forums that it is more effective with men. I was switched to Mayzent this month – so far so good and easy too – a small pill a day. I am 58 and still limp with a walker (spasticity over half of my body, the other half is weak) . Don’t let them tell you you are too old. Life expectancy is much longer now. An early happy birthday to you!
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Hello, I’m new to this forum, but am especially interested in this thread (and Ocrevus)!
I am 57 and was officially diagnosed with MS only a few years ago (most likely had already transitioned to SPMS by the time I was diagnosed). After lots of health insurance battles, I was approved for and started Tysabri a little over a year ago. However, I seem to decline after each Tysabri infusion. Although I’ve been told (more than once) I may have aged out to benefit from an aggressive DMT (even though I have no other health issues), I’ve been evaluating Ocrevus and Mayzent.
I love reading everyone’s experiences…
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Suzy,
I was treated with Tysabri for about 7 years and it worked well for me. I’m not sure what you mean by declining after each infusion. Do you mean you’ve gotten progressively worse? I’ve read reports of people who have felt a slowdown just before they’re due for their next infusion but they bounce back again after their treatment.
Don’t allow your neuro to convince you that you’re too old for an aggressive treatment! I began Lemtrada when I was 69 (I’m now 71). It’s held my progression in check and it seems to have helped, a bit, with my walking, bladder control and bowel regularity.
I wrote a column a couple of months ago about this age bias: https://multiplesclerosisnewstoday.com/columns/2019/10/21/am-i-too-old-for-aggressive-ms-treatment/
Ed
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Hi All
I’m 62 and started on Ocrevus exactly a year ago.
As a patient columnist I of course wrote about it: Steering My Own Boat and Making a Splash,The Right Hand of Lightness and my latest col Stop in the Name of Leukocytes
It’s been the most effective Disease Modifying Therapy I’ve had. However seems like even Ocrevus isn’t about to stop my active steamroller of MS .
At the moment in limbo – which is a tuf place for us atheists to accept!
Cheers John
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