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Ocrevus -advice

My Neurologist has recommended that I try Ocrevus to try to slow down the progression of my MS. He is very positive about the drug and is very keen for me to go on it.

We’ve been researching and the side-effects are concerning. The drug works by ‘dampening’ down your immune system, attacking your white blood cells. This apparently makes you more vulnerable to lots of infections, colds, chest infections, shingles, cellulitis and many others. More concerning is that it can apparently increase your chances of getting cancer. Both of my parents have had cancer and my father died of cancer, I’m therefore concerned the odds are already not on my side.

Has anyone else tried ocrevus, how have you found the day to day side-effects and how effective have you found the drug in helping to manage your MS? Have any of your specialists discussed the longer term side effects, for example increased risk of cancer - does that concern you, or have they been able to put your minds at rest?

I would really appreciate hearing about your experiences. Many Thanks

I have heard a lot of good stuff about it but from younger people with RRMS only one with PPMS who is doing ok at the moment but all of them are in the USA.

I was told about it at my last visit from neuro and i can sense from his answers he didn’t feel it would be any point with me as i have had MS too long, and would need a ton of tests before i even started if i could have it, then he mentioned about cancer link my sister had double mastectomy no thanks, so that ruled it out.

Also my score was too high over 7. EDSS.

From what i read if i was younger and healthier and no cancer link and was offered it i would have given it a go. there is a group for it on facebook. some good stuff on there. every meds react differently to each person.

Hi

I may not be of any help but I am interested in what others have to say too. I take Tecfidera. Ocrevus is an option for me and I discussed it with my ms nurse in Friday. Am I right to think that all of the drugs have this effect on the immune system? It’s how they work.

I like the idea that it is ‘highly effective ‘ as opposed to my ‘more effective’ Tecfidera. Are you currently on any medication?