I haven’t even gotten my first infusion yet and already my neurologist is telling me that when I turn 62 (which will be next year) he plans to have a “talk” with me about coming off Ocrevus. Because of the increased possibility of side effects that comes with aging. Bear in mind that he’s also already told me that there will be no other DMDs offered to me after this and no others I can take now—he doesn’t believe the lower tier drugs would be effective at my age or stage of disease (have SPMS with relapses) and the drugs even higher in efficacy than Ocrevus would be too risky for me. (I have a heart condition. Not alarmingly serious but it’s there.)
I can’t believe this. Was only diagnosed just last year and tried on only one other drug (Aubagio. Which raised my blood pressure). I feel like there’s no point in even starting the Ocrevus now. What good are 3 or 4 infusions going to do me? Has anybody else here had this happen to them?
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Footdropfranny
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Wow to hear that. If I were you I would still do it for the time being but I would also suggest you get a second opinion have to admit I'm nowhere near my 60's and I don't have SPMS.
Hi Footdropfranny , I have SPMS and am 62 years old.also. I have been on rituxim for the.last 5 years. My last Neuro visit I was told.the.same.thing that at my age rituxim should no longer be taken. She now wants me to start using copaxon. I haven't starting using it yet as I am waiting to get some financial assistance. I'm a little skeptical about using since I've heard also that at 62 what's the point of using any DMT. I'm kind of lost and don't know what to do. Let me know what you decide.
How frustrating. I’m sorry about the heart condition, too.
I’ll be 60 soon and wonder the same thing, but I think if Ocrevus is suggested by the MS center, I may still try it for as long as I can have it, since it may slow progression, and I figure that’s a good thing, even if it’s only for awhile.
I wish you the best with your decision. Please let us know how things are going.
My neurologist referred me to the MS center in Portland at OHSU. She had recommended I switch to Ocrevus a few months ago, but when insurance denied it, she began having second thoughts. I still don’t know if the referral has gone through, though it has been over 2 months. It’s probably time to call yet again.
Seems like you need a second option 🤷🏼♂️. My neurologist that specializes in ms doesn’t agree with anything about age effecting DMT’s. He said there’s no documentation and studies that support that they don’t work 👍. I am 64 and been on a DMT for almost twenty five years and still upright, driving and so on. Yes I have fatigue and other symptoms but I think that the DMT’s are the reason I’m still going 🙏😉 Ken 🐾🐾
I was diagnosed at 70. I have seen 7 different neurologists: all of them have said that DMTs will not work as intended in an aging body. As I have had adverse reactions to both Ampyra and the senior dose flu vaccine, I guess they are correct though it is difficult information to accept.
Wowowow! I would take the 4 doses and have a great 2 years and worry when it’s time for that. Keep your eyes open, there may be research that comes out or a new practice with MDs giving it longer.
Footdropfranny I was 65 when dx with PPMS. I was 67 when I started Ocrevus, about 4 mo. after it was FDA approved. I just started my 3rd year of infusions. I had not had any adverse reactions that I knew of til my neuro. talked to me about when I have blood work one kind of white blood cell has slowly been dropping since I started O. He will check my blood again in 3 mo. and decide if I need a "break" from O to see what my blood will do.
He has not mentioned age as a factor although I have read about people aging out of their MS meds.
I didn't really answer your questions, but I hope hearing someone elses experience will help.
Thank you everyone for your replies! My insurance approved the Ocrevus in lightning speed (a week) and I’ve got my first 2 half doses scheduled for 3 weeks from now. My plan is to see how the first 6 months go and if I can tolerate the side effects (hopefully there won’t be any) I’ll go for the 1st full dose infusion in the Spring. I don’t expect improvement though naturally I hope for it. My goal is simply to slow down progression.
My health, not just my neurologist, may prevent me from continuing with the Ocrevus. But if I’m doing well when my neurologist decides to stop it I’ll fight him on it and if that doesn’t work...I’ll seek a second opinion. Thanks again! You were all very helpful!
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