This is my first post ever as I’m not a big fan of social media so have never done anything like this before so forgive me if some of this does not make sense.
I was diagnosed with MS just under 2yrs ago and even though I joined this site just after the diagnosis its took all this time to accept it and find courage to reach out to fellow ms suffers. Even though I’m showing signs of PPMS my consultant does not no whether its this form or relapse and remit, however I have met the criteria for ocrevus which I start next month I would like to hear any experiences any one has had with this treatment good or bad.
I am on Ocrevus; it’s going OK so far, but I won’t know until I have my next MRI how good a job it’s doing. No terrible side effects, and it’s supposed to be a effective drug… good luck!
Hi welcome to the forum, I am a little like you I joined over 8 years ago but don’t go on very often. I have RRMS and am currently on Ocrevus had my first dose in September which I appeared to have no side effects but since then I seem to have picked up on every bug going, due to see the nurses on Monday then my second dose in March. Try it, you can always change to something else if you find it dosn’t suit you. I have been on 4 different things in the last 10 years. Hopefully this helps a little but we are a nice lot on this site and you can vent about anything. MS is a confusing illness and difficult to come to terms so any support is worth finding.
Hi Hel, in my experience RRMS and PPMS really are quite different. In RR you would have periods of attacks and clear periods of no progression or attacks. In PPMS, problems start and progress , either at a fast or slow rate. There is no let up in progression. People`s reports of their Ocrevus experience varies quite a lot. I hope you benefit from it. Ocrevus is available to those with PPMS if they have had for under 15 years.
I’m the oddball who doesn’t like Ocrevus, but it’s the only DMT I’ve ever tried after 40 years of consistent symptoms. i think it might be that it’s just too late for me. My neuro wasn’t going to put me on anything, because of my age, but he thought it was worth a try because of the deterioration I’ve had over the last year.
I wound up with most of the reported side effects from the first infusion and have been dealing with nonstop colds and infections ever since. That said, I’ve read that the majority of users have had good success with it. If you’re still reasonably young and otherwise healthy, it would probably be in your best interest to try it, if that’s an option for you.