subnormal
I had a late life diagnosis of PPMS and am surprised at the ferocity of its progression. I'm starting Ocrevus next week and am wondering if anyone would be willing to share their experience with PPMS and Ocrevus with me. Specifically did you feel any better? I'm expecting nothing, hoping for remission, and wishing for improvement.
Yeah, I know I'll have the answer in six months, but I'd love to have some first hand anecdotes to chew on while I'm sitting in the chair.
Thanks 😀
Lori Foster Member
Hi
subnormal Member
Oh well, perhaps I'll be the first to write about it!
martinra Member
It's coming up on my one year of Ocrevus treatment. I had the 1/2 bags in Oct. and Nov. then the full one in May. My last MRI showed no new developments. BUT, things continue to progress slowly. Looking back, I've had symptoms for more than 5 years with the last two being more involved. I continue to have some difficulties with tripping and pain and the other usual crap. My wife has been a great support (and, no, she's not looking over my shoulder as I type this. LOL) and has told me she sees the fatigue more but my overall progression is too slow for her to notice. I remain hopeful that this will at least help me progress more slowly than without it. I refuse to give in to this monster so I will try almost anything my Neurologist suggests because I have a lot of faith in him and I do not want to wait for the perfect when pretty darn good is here now. I know I have not had the same results as many others and the range is from real good to real bad. That's about as much as I can say for now. I will post on occasion about my status. Good luck and stay on this site. The folks here are great supports for us newbies.
subnormal Member
I promise a more fulsome thanks later. I have enough energy left right now to drive my sorry butt home and crawl into bed, but I really appreciate your response!
subnormal Member
Thanks again for the superlative-free assessment,
Isn't it awesome to have your wife in your corner? My wife is very observant, so I can always count on her for a realistic assessment of things. She and I share a Doctor, and they had the following conversation the other day:
DOC: How's subnormal doing with his treatment? We tried something new last week.
WIFE: Doesn't he tell you this stuff?
DOC: No. He doesn't like talking about his MS things.
WIFE: He doesn't tell me things either.
DOC/WIFE TOGETHER: MEN!
My wife then went on about all the stuff she observed. lol
Cnthneal6 Member
CommunityMember1815 Member
About Ocrevus and PPMS: I was on Ocrevus for 2 years and continued to have slow progression. I've had MS for 18 years and Ocrevus is the 3rd DMT. I'm lucky that progression has been slow. I'm 74 and still walk with use of cane ,but getting rollator soon for longer walks. None of the DMT's are very effective for us old people. Immune senescence! And the drug trials do not accept anyone over the age of 60. So I've accepted that I will continue to progress but maintain my independence with assistive devices,(neural sleeve and rollator are next) and lots of exercise: elliptical, Yoga, assisted weights and as much intellectual activity as I can find (3 book clubs, online classes)
CommunityMember1815 Member
Erin Rush Community Admin
Best, Erin, MultipleSclerosis.net Team Member.