Has anyone been on ocrevus? My doctor wants to put me on it but I’m concerned about side effects in the current climate
Hi Jennifer, I just started ocrevus in July and so far so good, don’t have any obvious side effects. I’ve been worried too about how much it can impact my immune system but was really only option for me as taken a few other dmds and I’m not allowed tysabri anymore, so fingers crossed. For me, it’s really important to be on DMD as suffered big relapse inbetween different dmds 2 years ago. Hope this helps, good luck with whatever u choose. Froo x
Yes, I had Ocrevus with no major side effects in January… was due another infusion in July, but it was postponed and just waiting for a new date. Can’t say I’m unhappy about that, in the light of what’s happening! (going to a big hospital full of ill people just doesn’t seem like a good idea at the moment!) They’ve told me the postponement won’t do me any harm, but if I start getting problems because of it, I have the phone number to call. I haven’t had anything out of the ordinary happening, so am waiting to hear from them…
Thank you so much for your email. Will update when you know what to do. I’m a no in the current climate but…
It’s the common side effects I am worried about
I’ve found that if you took too much notice of the ‘possible’ side effects of anything, you wouldn’t take so much as a paracetamol! The possible effects of the MS are far worse…
I’m one of the odd ones who had side effects after taking the first two half doses late last fall. Nearly 6 months’ of nonstop colds, sinus infections, tooth pain, extensive tooth loss, clogged ears. I was on more penicillin during that time period than I’d used the other 54 years of my life. They were a constant nuisance, because I couldn’t lay down without coughing and often pulled my CPAP off during the night because I couldn’t breathe.
My neuro doesn’t feel that any of those are good enough reasons to stop taking Ocrevus. He’s sending me for an MRI next month. If it’s not showing any new lesions, he’ll cave in to my insistence that I stop it. If I do have new lesions, he’ll try to convince me to either continue taking it or try something new.
My situation is a bit different, though, in that I’ve had MS for 40 years but didn’t get a diagnosis until last fall. I’m so far advanced with it (and my age!) that there’s little chance that any of the drugs will actually help me, so dropping them altogether isn’t that big a deal. If you trust your neuro, follow his advice. Most of the feedback I’ve gotten on Ocrevus has been positive.
Hi ,I ve been on Ocrevus since march 2019.I was due to have it again on March 12th (lockdown) so only finally had it 10 days ago on 9th sept been feeling a little rough now have urine infection but antibiotics sorting it out so not too bad.
MRI result (4 weeks ago) no change in lesion size or no additional ones since starting Ocrevus
I received aGP copy letter today statind that trust protocol(Birmingham QE)has changed and that Ocrevus will only be given when CD19 count goes above 1% (mine went from1% to 8 % in the time in covid lock down).I believe they are diong this to reduce infecton risk because of covid.
Hope you get on OK