Ocrevus treatment

Hello all, quick question …… has anyone else been offered ocrevus as a treatment and if so what was your experience of it ? I have been offered this treatment and as yet am bit nervous of accepting it.
Many thanks

I’m starting the treatment next week. Just done the initial checks like blood tests, chest x-ray etc. Feels like I’ve had a bit of an MOT which is good as it’s pretty hard to get hold of a GP in our area especially since Covid. I have first infusion on Wednesday and the second a couple of weeks later. I rejected this treatment a year or so ago partly because of Covid because they said it might make patients a bit more vulnerable to infections. But since then I’ve had so much fatigue and an episode of optic neuritis and so thought I’d give it a go. Let you know how I get on.

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Hi there Akos,

I’m a few infusions in (seems to have stopped happening now cos of Covid). It’s been pretty straightforward. I work full time so ask for two days off- one for the infusion and one for the day afterwards because it does wipe me out for a day. I can only describe it as like a hangover! Also depending on blood tests etc you can end up being on the ward for 10 hours. I haven’t experienced any infections as a result of Ocrevus.

Good luck!


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Thanks very much for your replies, I suppose I’m just looking for some reassurance that it’s not gonna kill me !! Sound ridiculous I know but to hear how others have gone on with it really helps……
Yes, please let me know how you get on.

Had my first dose of the ocrevus drip treatment last week. I was there from eleven until half five and have to go back next week. It went fine and I had no ill effects after or the following day except an awful headache but I think that was caused by SEVERE BOREDOM having to sit in a hospital chair for hours on one of the loveliest days of the year. My main memory of the day is BOREDOM - get yourself a good book or whatever you like to do. And take a sandwich. I have heard that some people feel dreadful afterwards but had no problems at all. More next week.

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Hi whoever is reading.

I’ve too have been offered this treatment last week and am seeing my neurologist next week to clear up a few issues with it before I start.

I know it increases susceptibility to other infections although reading ZFB’s post below perhaps it’s not as bad as I might fear. One thing I’m unclear about is, after the first two, do the subsequent infusions act as some kind of boosters meaning that the effect of the treatment wears off gradually between them, or is the effect more of a straight line with the six monthly infusions acting to fill up the reservoir of the drug (a bit like refuelling a car doesn’t make it go any faster, just longer)?

I think the reason I’m asking is if Covid eventually becomes less of a worry and we are permitted to go on holidays again would it be worse to go just after an infusion as the treatment is at its strongest (meaning my antibody system is at its weakest) or does it not make any difference?

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Thanks Josie, I’m glad it all went well for you and no ill effects followed …… and thanks for the tips :ok_hand::grin:

More infusing tomorrow. I’m taking three books, my phone and lots of interesting snacks. Also was really glad I took one of those semi circular neck pillows to support my neck in the chair. It reclines quite nicely and they did give me a cushion but being there for hours on end you can’t be too well-prepared. As last time it’s shaping up to be a glorious day outside.

Hi Josie. Thanks for your posts.

I’ve recently been approved to be put on to Ocrevus and I’m keen, because it appears to be more effective than Tecfidera, which I’m currently on.

However, my MS nurse has suggested that Ocrevus will put me more at risk from COVID and has suggested an alternative less effective treatment. Has anyone spoken to you about the risk of COVID? I think I’d rather prioritise the treatement of my MS.

Hi there, I was offered Ocrevus around the time that Covid was just being talked about (about pre-first-lockdown) and turned it down. Partly because I just didn’t feel like taking on a treatment of that sort yet and because no-one knew much about Covid. Of course there weren’t any vaccinations either. The next year I did have a lot of relapse symptoms and then optic neuritis and was feeling so fed up I decided to go for it as I was offered it again. I think the fact that you have probably been vaccinated (?) by now is good but you might also want to think about your general health. I don’t tend to get colds or respiratory issues, can’t remember when I last had a cold and also have a husband and son at home to look after me when I’m not feeling great. However I also have a very elderly mother to keep an eye on. So it’s really up to your personal circumstances. But I think generally if you don’t have some bad underlying health condition that would affect your immune system then have a go with the Ocrevus. Let me know what you decide.

Hi Josie . Just wondering how you have got on after your infusion. I am seeing the consultant on the 15th so am trying to prepare for treatment options
Although i dont have a diagnosis as such yet my consultant has sent me all the MRI results and lumbar puncture results copied of her letters to my gp . I keen to try and learn about any side effects of this treatment from someone who’s on it .

Sorry for the late reply, your message went into my spam folder. I’ve had the two initial infusions - shorter ones two weeks apart. I can’t report back any side-effects as yet though don’t suppose this is the same for everyone. I felt fine, just extremely bored sitting in a chair all day. I suppose the thing with this treatment is that it won’t necessarily make you feel immediately better, just not so bad so quickly over a long period of time. I know it’s reported to lower the immune system a bit and if I was inclined to lots of colds, respiritary infections or other infections I might be more wary of doing it so in a way it’s a very personal decision. So far so good, and I don’t have to go back now until March. Good luck with your decision. Getting a diagnosis can take a long time but a lot of people find it helps to know what’s causing your symptoms.

I want to be given Ocrevus. I have had PPMS For 14years. I was initially told I would get it, then
Covid hit and was then told no. To say I was upset and disappointed was an understatement. I have this week emailed my MS nurses to as them to ask the neurologist to ask him to reconsider his decision. I have had any reply yet and just so tired at having to fight for things that might help me.

Any suggestions greatly appreciated.