PPMS and Ocrevus

Hi . In searching our archives, I keep finding posts from people with PPMS who were about to start Ocrevus or had just started it. No follow-ups though. I hope you get some input from the community and that Ocrevus helps. Best of all wishes. - Lori (Team 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.

I have been on Ocrevus for almost 4 years and I can truly tell you I am much better for it. I started out as a wreak. I was falling, cognition very poor, looked drunk all the time with left leg spasms and pain. I tried to drive myself to work and had to pray to and fro for nothing to happen. I got with the right Neurologist and he started me on Ocrevus. I can tell you it was a game changer. My symptoms slowly disappeared. I started back using a cane. Cognition better. Legs stronger I could sleep at night without spasms. I have minimal amount of pain. Although there is still slow progression and now use rollator, I could drive up until March of this year. My infusions last about 4 1/2 to 5 months and I become more unsteady, but still better off than I was. Everyone is different and this is my experience with Ocrevus and pray that your outcome is even better. Let me know in 6 months how you doing. Love to hear your story.

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)