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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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This is in response to Chris and his first infusion- You don’t tell your background (age, number of meds tried, current MS status), but this did show up in my inbox and I wanted to help give you at least some direction. I don’t get that response from Ocrevus, which I’ve only had my first two one half doses of. I am over 55, which this thread addresses. I don’t actually anticipate it will do much for me- I was on betaseron since 1995 and had a great response until my MS went secondary progressive (type = not active but with progression {an oxymoron]). Betaseron is an anti-inflamatory as is Ocrevus, although they work differently with the same outcome- minimizing inflamation which brings on further inflamation and subsequent nerve loss. But I don’t have inflamation seen on MRI. Doc says my strength and coordination may be declining as I am getting older- that is, this is what happens with old MS scarring as one ages, maybe. But to your question as to can anyone relate- I think I can. Betaseron can have some occasional nasty temporary side effects like an 18 hour stretch of the worst flu you’ve ever had. Over the course of the 25 years I took the medicine, I had that occur maybe 20, 25 times, randomly. Easily treatable with Ibuprophen and a thick blanket. But the 25 years of treatment did keep me from having further attacks. So I am left now, at 61, with a much more functional nervous system to help me face the rest of my life. No wheel chair, no cane usually , some fatigue, sometimes I look drunk, and I have to know where the bathrooms are and wear a diaper when I don’t. Things could be much worse. So I relate to the temporary side effect you describe, and my opinion is you have to deal with it. It’s not nearly a big deal as might be the consequences of MS without treatment. If you have no MRI activity, you may want to discuss with your doctor why you are on it. On a side note, do some research on something called Biotin. It may be useful. Best of luck to you and plow ahead. I can relate.
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Hi Tom thanks for getting back to me i’m just getting used to the forum. I was diagnosed not long ago with ppms i’m 57 and as I look back I’ve had symptoms for about 20 yrs. but I just dealt with it. I didn’t think it was anything big just another thing ,and it would go away, I complained to my doctor but all I ever got was (use it or lose it). Now i’m trying to deal with it, its all so very new to me. I was an alcoholic for 32 yrs. but haven’t used drugs or alcohol for 13 yrs. now. I was self medicating my depression and anxiety. I’m going to keep up the treatments I have my second half of my first infusion tomorrow 1/29/20 I just got the flu after the first half. I’m not used to being sick my immune system was great but it was bored and started attacking good stuff like myelin. I really started getting worse after I got rid of hep c I guess my immune system had something to do then. I’ll pray it will work out good for everyone with this weird diesiese.
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I am 60 and was taken off Techfidera on November 2019 due to a relapse. I am expected back at the MS Clinic in mid March with a decision on taking Lemtrada, Ocrevus or Cladribine. I spent most of November and December looking at everything I could find on the 3 DMT’s however it is the potential side effects that are stopping me from proceeding. I am not comfortable not knowing what a reduced B cell supply means long term. I don’t want PML either. Cost is not an issue for me thankfully. In the meantime while I continue to feel my decision will be no DMT’s I am trying to eat healthy trying to follow the Wahls Protocol or Dr. Jelineks Overcoming MS. But it’s really challenging. Old habits are hard tochange. I have given up most sugar except for a cup of coffee with 2 sugar each morning. It’s my one firm stance as I want to enjoy a cup of coffee before starting my day. I guess my question is did anyone try food management as a choicebefore deciding these drugs?
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Lana,
I’m 71 years old and have lived with MS since 1980. I’m coming up on being two years past my second round of Lemtrada and it’s worked well for me….no disease progression and a few symptoms have improved a little. The side effects have been minimal.
I write occasionally write about my Lemtrada journey in my column, The MS Wire. Here’s my most recent piece. I hope it interests you.
Ed
My Lemtrada Journey: Observations at 18 Months After Round 2
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Lana above asks “did anyone try food management as a choice before deciding these drugs?” Hello Lana- your post showed up in my inbox this morning, and fits my experience somewhat. So,..back in “the day” (my day) when I first actually reacted to knowing I had MS and actually sought to do something about it (1994-ish), there were steroids and a new drug Betaseron, and that was it. As with most illnesses, there were suggestions for diet including anecdotal reports for “cures”. I found a “Swank Diet” in a book titled “The Multiple Sclerosis Diet Book” (still have it), 1977,87; from earlier publications). You can learn about it by Googling “What is the Swank Diet”. But in a nutshell, it is a very low fat diet with a bit of scientific evidence behind it. I’ve been on low-fat ever since (maybe not as strict now, as Dr. Swank would have liked), and I did 25 years of Betaseron and am on Ocrevus now. (I did well, relatively speaking, combining Steroids, Betaseron and Swank). I haven’t needed steroids since the late 90’s. At the time I had put some weight on anyway, and with a lack of a proven way to go, I went with Swank knowing it couldn’t hurt (most people) to eat low fat. What I liked about Swank was that he had actually tried his best to support his claims scientifically, and at the time I had just graduated with a PhD involving research methods, so it was a step up from anecdotal evidence and hearsay. But having said that, when one is combining various strategies to treat something, scientific rigor is lost and all you have left is the story. So that is “my story”, in part. Yes, I did “food management” along with other treatments, and I had a positive outcome. I did not do “food treatment” alone. I do not believe, anecdotally, that a low fat diet alone would have accomplished more than what Swank found, which was a slight statistically significant decrease in negative outcomes. Generally speaking, my acquired knowledge does not point to diet as more of a cure, for most illnesses, than a placebo controlled tested medication with statistically significant results. Everyone always says “talk to your doctor”. I hope my story helps.
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