Just wanted to say that i have been on rebif for 7 years now. I have not relapsed on it but at the moment i feel really rough - i have for a few months now.
Of course you need to seek advice from your neuro which you realise.
Your post has been taken over unfortunately because someone has made such irresponsible comments.
In my own case i have decided to stay on my dmd as i feel i would be possibly in a nasty relapse without it. I see my neuro in October and will discuss it with him then.
I don’t feel great atm but i think i would feel a whole lot worse without it. DMD’s don’t stop your ms but i have done really well so far so i believe this is just a blip and not down to the DMD. I would be scared to come off it and like Rizzo experienced - go from a low score on the disability scale to a higher one.
This is a decision that could have life changing effects as you are well aware. People have jumped on this post because they would hate for someone to give irresponsible advice and for you to take that advice.
I hope you feel better soon. Sometimes we have to grit our teeth through bad patches for the sake of our long term health.
I was at work today talking to one of my colleagues who has a friend with MS. She came off DMD to get pregnant , now 5 months pregnant and is far worse off now than she ever was. Numb arm problems walking and deteriorating eyesight. It really brought it home to me that it’s better to be on the avonex than off it and it’s not a risk I’m prepared to take. I’m not unwell at the mo but then I wasn’t actually unwell when I was diagnosed. Just numb feet and hands. I get the occasional aches and pains in my joints and that was the main reason why I posted this topic. I’d rather put up with the side effects than be in wheelchair sooner rather than later as someone kindly put it - I think that comment was unnecessary as it implies you’d end up in a wheelchair anyway. So for the mo I shall put up with what ever comes my way and wait for my neuro appointment Lesley
Thanks for the advice guys. Am prioritising having a baby first but then think I might try the avonex. I like the idea of only having it once a week rather than more frequent with the other drugs. I can always stop having it if I got bad side effects like Pat did.