Forum

Having a Big Wobble re. Risks of Immunosuppressants

Hi everyone,

I have just had DX confirmed and been suggested Ocrevus by Neuro. Of course I am reading up on everything re. DMD’s and have terrified myself by the number of accounts that seem to suggest there is a massive link between immunosuppressants in general and developing cancer.

I will be due to meet with an MS Nurse in due course so am guessing I can discuss these worries then, but just wondered what others’ thoughts are on the forums??

Thanks, Minnie xx

Hi Minnie

That will be me in a few weeks - not sure what my choice will be (3 attacks in 2 years )

Will let you know

Regards to Mickey

Hello Minnie

I think you already know what I think: hit MS with the biggest guns you can. Try to stop relapses, and thus disability.

If you’re offered Ocrevus, in your shoes, I’d take it. Yes, there are potential side effects with Ocrevus, but there are with all drugs. I had serious cognitive problems with Avonex (years ago, my first DMD), and that has a good safety profile, low relapse reduction rate and reasonably minor anticipated side effects.

So when you take any drug you are taking the chance of side effects.

It’s a balance between benefits and costs. The benefits being relapse reduction, and the costs being possible side effects.

Obviously you need to make the decision for yourself. A good place to have a look is https://shift.ms/ There are possibly more people on there who are either making the decision to take Ocrevus, but also people who are on it. I’ve just taken a look (use the search tool and you are offered Ocrevus as a popular search term), and seen there’s also an interview with Professor Giovannoni (very bigwig in MS terms - lovely man too).

Good luck.

Sue