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Are you over 55 and deciding if Ocrevus is right for you?
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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
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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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I guess this thread is a little old (no pun intended), but its exactly what I’ve been looking for. I am 65, diagnosed in my early 30’s with RRMS and have always been mostly mildly affected by my symptoms. About 5 years ago, my neurologist suggested I might want to try some of the new drugs to keep symptoms at bay and I agreed. For about 18 months I took Tecfidera, then switched to Ocrevus infusions shortly after it was approved. I’ve had three so far with no side effects. It IS hard to say if it’s doing anything – my symptoms are might have moderately advanced –slightly more noticeable numbness, weakness and balance issues — but nothing extreme. Recently I moved to another state and went to a new neurologist hoping to get the infusions continued. I was stunned when he questioned why I was getting them at my age. He mentioned studies that seemed to indicate they had little effect among elderly patients. I couldn’t really defend their effectiveness since I didn’t know if I was any “better”, but I also didn’t know if my condition might not be worse without them. (He even questioned whether I was sure I HAD MS and ordered another MRI, which did confirm “fairly extensive disease”.) I guess my question to the group is has anyone been counseled against getting Ocrevus infusions because of their age affecting efficacy? I am aware of the impact on the immune system — but isn’t that was the same with Tecfidera and presumably others. Has anyone had any experience quitting Ocrevus infusions? If the doctor is right and the drug is having no effect, I worry about what happens when I stop. Any advice out there?
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Hi Jan,
If you’ve read through this whole thread you’ve already read most of what I want to tell you, so I’ll keep it simple. My neuro believes that disease-modifying therapies can be effective for people older than 60. There are some of us old folks who may have decided they’re done with DMTs at this point but I’m not one of them.
I started Lemtrada in December of 2016. It was a roller coaster ride of ups and downs but now, more than two years after my second round of that med I can say that 1) tests show that my disease hasn’t progressed and 2) tests and personal experience show that some symptoms have improved a little, most notably my ability to sleep through the night without waking to pee, or waking only once, and an improvement in bowel regularity.
I’ll be 72 in a little less than a month.
Good luck!
Ed
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Greetings!
I’ll be 57 in 2 weeks. I’ll have my first 1/2 dose infusion of Ocrevus on the 18th. I’m RRMS but my disease is getting worse: 3 new lesions, 3 activated old lesions, more symptoms. I’ve been on Abagio since 2016. I have worsening symptoms over the last 6 months so the new lesions weren’t a surprise.
I’ve had MS at least since age 30, maybe longer. I also have Lupus and is fairly well controlled on plaquenil. I do have a lot of pain too.
I hoping that Ocrevus will be a good fit for me.
Thanks for sharing, everyone. It’s hard dealing with this roller-coaster ride of a disease!
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Hi Lisa
Ocrevus was by far my fave DMT until I could no longer have it due to my low leukocyte level. Reckon Lemtrada first began that damage.
Still did feel better on it…
Good luck
Cheer John
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