Ocrevus and Random Side Effects?

Hi everyone,

Forum newbie here but I’ve been an RRMSer for the past 10 years. First presented with Optic Neuritis which was recorded as CIS. Took another 2 years for a proper diagnosis - or shall I say, for repeated MRIs to show continued and increasing lesions.

I went a year without any DMT until symptoms started to get out of hand. Mostly leg pain, but progressive brain fog, and balance issues meant that Tecfidera was prescribed. I took that for the last 6 years (and put up with the horrible side effects that never really went away) and it was like the MS went dormant. Scans all clear and even some shrinkage in pre existing lesions. Until march of this year when I felt a bit off, went for a nap and woke up completely numb on my left side :frowning:

MRI showed that MS have now moved into my spine - C1 to be exact. While I’m grateful that I have regained all the feeling in my left side and can walk again without an aid, I have some incredible nerve pain and some pretty wild symptoms (like hot water feeling like cold water but only on one side of my head!).

Anyway, as the disease is on the March I opted for Ocrevus infusions and finished both doses of Part One in July. My question is (and thanks for sticking with me till now!) has anyone had any weird, off book side effects from the drug?

I’m having bleeding gums and dental pain which has been assessed by two dentists and a hygienist and both have said my teeth are in tip top shape. I have stabbing pains in my right breast (which are being checked this week by the breast clinic), and I’m getting raised bumps and itchy skin in my underarm area which I’m assuming is an allergic reaction to something …I have never had any of these problems/issues before the treatment and the pain is not like anything I’ve felt before.

I have spoken to my nurse who said that they have not heard of those side effects reported with Ocrevus before but that everyone is different. Just wondering if anyone on here has had anything similar?

Oh and the infusions went without a hitch. No reactions, no upset tummy, not even a headache. I did feel like I had been hit by a truck and needed to take a week off work after each part - so tired - but I recovered pretty quickly.

Any insight would be very much appreciated.

Hope you are all having the best day that you can. :slight_smile:
Claire

Hi Claire
Your feeling of being wiped out after ocrelizumab infusions could be down to the pre-meds that accompany it. The standard pretreatment medications are the steroid methylprednisolone plus diphenhydramine and acetaminophen analgesics.

I was on a clinical trial where (as I discovered) the ocrelizumab was actually a placebo (it was the alternative drug, delivered as a tablet that was real) but I still got the real premeds. The steroids were marvellous: for 2-3 days the aches & pains went away! Did feel a bit groggy too.

Graeme