Hello, I had my third (or second - basically my first full dose!) of Ocrevus at the end of September. Although my usual symptoms have remained the same, only flaring when tired or stressed, I’ve developed some new muscle twitching in my legs and torso since my last infusion - nothing big but tiny muscle spasms which are visible but not debilitating. I’m currently waiting for MRI results to see if there’s been any progression since starting Ocrevus, but not sure if I should be concerned that I’m getting some new symptoms?!
Has anyone else experienced this or is this just part and parcel with MS?
thanks in advance.
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Hi @airdrop-geckos.4d I can’t comment on whether it’s the DMD that’s causing you your new symptoms but, for peace of mind.. your mind, itmight be worth checking with your ms nurse or neurologist if it’s a possibility. Unless of course it is in that list of dreaded side effects! Then you should probably also mention it too, to your nurse, neurologist or GP. Wishing you well on Ocrevus and that it keeps you as stable for as long as possible.
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Thank you - I checked with the MS nurse who isn’t convinced it’s related to the MS but is requesting bloods anyway to rule out any infection.
But after a 2 month wait I’ve also received my latest MRI results which shows more lesions - thought to likely be related to pre-infusion activity…my MS was very active last year. I’m hoping to be able to see my neurologist at some point but they’re not very easy to get hold of are they!
Neurologists, GP’s, ms nurses, they can all be difficult to pin down at times. Perseverance I think, is what’s needed @airdrop-geckos.4d. Hopefully you’ll see someone and get the answers you need soon enough.
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Hi, I had my first doses of Ocrevus in July 2025. I can’t recall exactly when I started having twitching but it was after my infusion. Mainly in my legs/feet but I am now experiencing it all over in random places. You can actually see the ripples in my legs with the twitching. My MS nurse doesn’t think it’s a symptom of Ocrevus or MS but I think it is related as you aren’t the first person to also report this as a symptom.
That’s interesting that others have experienced it too - I still have these and occasionally in my face and arms too! I have an MS nurse apt soon as due another infusion so will raise it again.
Just relaying my experience, after my first Ocrevus infusion I had burning inside my neck, so went to A&E, the MRI in the following weeks found no change in my cervical spinal cord. Point being, the post infusion and MS symptoms can be concerning, even when it transpires to be nothing. I found keeping a log or document of MS symptoms with dates is useful when at the mercy of the medication and MS. With regards to the muscle twitching, it sounds neurological, but I get that even before Ocrevus. My MRI after first Ocevus found some disease activity, the one after found no change, perhaps just a case of giving it time to work. I had horrendous infusion reactions from Ocrevus (night sweats after first infusion). I refuse the pre-medication steroid as I suffer with side effects from that as well. I was due my third Ocrevus infusion in two days, but I am debating having a short break from this medication, my B-cell percentage is at 0.2, so the neurologist said provided it’s below 1%. Hope you manage to find some answers for your symptoms. One thing I have learnt is to get multiple opinions. I have found the neuro-pharmacist to be helpful, and I have switched neurologists four times now, each provided useful insights.
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Thank you stewardcity - I’m sorry to hear you’ve had a rough time with it - the aftermath of the infusion is no joke and I can emphasise with the night sweats - did you go for delaying the infusion? I’ve heard some people go every 9 months instead if they catch a lot of illness on it
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I did not attend Feb 2026 infusion, and they delayed it until May, but they said they cannot extend to 9 months until completion of third infusion. But I am concerned of immuno-suppression and hair loss side effects (I have a forum post on that which I keep updated). The Neurologist mentioned the options of Mavenclad or Briumvi, however I said there is no point changing medication as it would be an unknown and there are concerning risks with the alternative MS medications. Unfortunately, I suffered a delayed diagnosis of MS and the cervical demyelination was detected years later. I am at risk of paralysis, hence the Ocrevus is required in an attempt to slowdown disease progression. I feel cornered by the MS disease and medication, I am damned either way it seems, I would prefer to have a longer break, however it would be inadvisable no doubt. Medication affects each person differently, so hoping your experience is better.