Last reply 1 month ago
New starts: Ocrevus

Hi all 🙂

So after over a year on Tecfidera (feeling pretty good after recovering from initial relapse) it has been decided that my MRIs show slight changes (an active lesion) and that the meds aren’t working. Rather than continue with an ineffective treatment and hoping for the best, my consultant has given me 4 options.
Lemtrada, tysabri, (one I forget the name of beginning with a C) and Ocrevus.
Based mainly on effectiveness and side effects we are going with Ocrevus.

I’m just wondering if anyone can give me a heads up of their experience on the drug? I know it’s only a year old so not many people will have tried it but hopefully you can east my nerves a bit!

Thanks,

Sophie xx

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stumbler
1 month ago

@sophia_gaston , some tags have been automatically added to the bottom of your post above. Selecting the “Ocrevus” tag will take you to previous conversations regarding this drug.


marlon_dagg
1 month ago

Alright @sofia_gaston?
I started Ocrevus on Tuesday. I’ve only known about my ms since November too. So whether my input will be any good to you or not I don’t know but I’m all honesty I suffered none of the infusion related side effects and can’t wait to get the second half of the infusion a week on Tuesday. So I guess I can’t really talk about what good it’s gonna do but hey I know nothing of this disease but I’m just game as a pheasant to take it on.
Marlon


mlgilber1
1 month ago

I was diagnosed this past summer and then had a bad relapse a month later. It left me unable to move or feel my left leg and I needed plasmapheresis in order to regain control. I had a ton of symptoms and my balance and dizziness were so bad I was using a walker. I had only been on Tec two weeks, but my neuro and I decided I needed a more aggressive treatment because they told me my MS was aggressive. I started September of 2018. I had a slight reaction during the first half, but only itchy scalp and the nurses took care of it. I had no reactions during the second half. I did a little worse for a little over a month, but then most of my symptoms disappeared completely and the rest lessened tremendously. I no longer need my walker, I’m faster, and have good balance. My energy went up and no more cog fog. Tingles went away that had been there for over a year and many other symptoms… I did get the shingles a couple months later which flared things up a little, but settled back down. Now I’m a month away from my full and my symptoms are returning. I spoke to my nurse today who agreed it’s probably the Ocrevus wearing off early because a lot of patients report it happening a month prior. I honestly can’t wait for my infusion. In the US I know some people who got their neuros to talk to their insurance company to get the infusion approved every 5 months if they were feeling bad and their bloodwork showed the B cells starting to repopulate so I’m going to see if we can maybe do that next time to avoid what they call “the crap gap.” I’m still very happy with my decision. It was the closest I’ve felt to “normal” in a long time and I’ve made so many improvements. I have my first MRIs since starting this Sunday that I’ll get the results for beginning of March and my first full dose then as well so I plan to do an update on here then to see if it’s helped slow progression and how I did with the full dose. Good luck!

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