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Ocrevus

So l had my first ocrevus infusion last week, second due next week. All went well on the day but a bit down hill after. My walking seems to be much worse than usual and fatigue is constant, also had two days of incontinence which is new. I’m really hoping this is only because it was my first dose and will settle down given time. If anyone has any similar experience it would be great to have your feedback.

Hi Ellieoma,

Sorry to hear your feeling rubbish after Ocrevus.

I had my first half of Ocrevus 11th March this yr and like you infusion went ok and the first few days ok but then like you symptoms of ms that had settled re-emerged.I had worsened paraesthesia of legs and right hand,horrible head aches /odd sensations in my head (which I had last relapse) and generally feeling low .I started to feel more anxious that Ocrevus had “poisoned me”.

However after 2nd half dose symptoms settled somewhat. Im sure my anxiety made things feel worse ,I even contacted ms nurse feeling anxious about symptoms and she reassured me.I found yoga (for beginners at home)have helped me to relax .

I had my infusion with another lady I had met in clinic who also had Ocrevus and also initially felt worse .She now feels good and told me that she feels the best in a long time. I keep in touch with her and our next full dose is due September 12th,its nice having a Ocrevus buddy.

I cant say Ocrevus has had a positive affect but remember its to hopefully slow ms progression it doesn’t change symptoms that we already had /have.As for your incontinence symptoms if it continues get GP to check for infection .Hopefully it will settle.I had bladder retention prior to Ocrevus and had to self catheterise (which really upset me at first) but bladder is back to working order and better since Ocrevus.

I was diagnosed last yr with RRMS .This is my first medication for ms.Still infact getting my head round having ms.

All the best ,feel free to talk/ask questions .I do.This site has been so beneficial to me.

Have you had previous treatment for ms?

Thanks Kirsten that is very reassuring,like you I was diagnosed early last year and put straight on to copaxone. Unfortunately I still had three relapses while on it, so my neuro thought it may have gone to progressive,but wanted to try ocrevus first.