Dx Oct 2012 with RRMS. I’ve been on Tecfedira for 18 mths and get on fine with it. Main side effect is the flushing. Anyway I have active lesions in my brain and spine. My last MRI shows new active lesions in a new part of my brain - Boo the new lesions. I’m currently overtly stable.
I’ve been offered the chance to go on this drug as part of a trial. My google research doesn’t give me very much information on the side effects. I know that it’s the first treatment for PPMS which is great but it’s certainly fiercer than the Tec I’m on. I’m having a further MRI soon to establish the current situation, which will have a major bearing on which way I go.
Is anyone on the drug who can give me more information or does anyone know the possible side effects and there frequency?
Thanks in advance - I’m also posting this in the PPMS forum
Hi, this is the most recent post I could find on the Barts MS Blog about Ocrelizumab. If I read it right it mentions 80% of MSers in the trial had no disease activity from 6-24 months. So better than other DMT’s including Lemtrada, Tecfidera?
In the phase II RRMS study, serious side effects were rare and comparable in all four groups. However, one patient in the ocrelizumab 2000mg group died due to brain oedema (swelling), after the occurrence of systemic inflammatory response syndrome with multi-organ failure. The connection of this death to ocrelizumab is unclear.
At first infusion, more people in the ocrelizumab groups (35%, 44%) had infusion-related adverse events than did those in the placebo group (9%).
In preliminary results (link is external) from the phase III studies Opera I, Opera II and Oratorio, the most common side effects were mild to moderate infusion-related reactions. The incidence of serious adverse events associated with ocrelizumab, including serious infections, was similar to the other treatments.
i looked into this ahead of going for lemtrada. It’s basically billed as having the same sort of efficacy rates re. stopping relapses as lemtrada but without the risk of picking up a secondary autoimmune disease that comes with lemtrada. So a pretty fabulous drug. Downsides of it compared to lemtrada were, to my mind, the fact that you needed infusions every six months for life and the lack of long term trial data both in terms of efficacy against MS and side effects (e.g. Is there a risk of increased risk of the infusions are given over years akin to the tyrants pump risk).