Forum

feel like stopping rebif

Evening everyone

hope you are all dealing ok with this heat . I have been diagnosed with rrms for 16 years now on December my legs went now using a crutch , feel im never getting any better . Had another mri scan , think my m.s is progressing (thats what i think ) Feel its pointless taking these injections now as they have not done any good .Would like to try some kind of treatment other than rebif now but what ? Everything seems pointless , keep bursting into tears all the time , feeling very low and depressed :frowning: Thanks for listening to my moan

Fiona x

Hi Fiona, it might be worth talking it over with your MS Nurse. Rebif and the other DMDs aren’t supposed to make you feel better or affect anything that has already happened. They are to reduce the frequency and severity of future relapses, that’s all. If you’re still having relapses a change might be apporpriate but if you’re not relapsing, they might be doing what they’re supposed to do. MS is a chronic progressive condition, they won’t stop that but if you can get the relapses to slow down, I think that will help. Good luck with whatever you decide.

Bringing post back to front page.

Fiona, I am sorry you are having a bad time. MS is good at that - even when you have had it for a little while and are getting on OK, it has the power to make everything just suddenly feel a bit hopeless, just by grinding a person down. Plus, of course, its ability to take the legs from under you - literally or otherwise - without warning.

It sounds as though you feel your treatment plan is just drifting a bit. That can happen as years go by, particularly when things start going a bit awry (I remember that feeling well from my own experience…). Does the recent MRI offer an opportunity to sit down with the neurologist for a proper, gloves off review of where you are, how your MS is behaving, and what your options look like for treatment etc? There is always guesswork with MS, but it can help at least to have the specialist opinion to help guide your thinking.

Low mood: that is usually something that the doctors are better at fixing than they are at fixing MS, quite honestly. If you have not already spoken to the GP about feeling low and tearful and hopeless, please think about doing do. Might as well fix the things that can be fixed. I know that, when things are really rough, it can be hard to imagine ever being in a better place. Try to let yourself believe that there are medications and therapies that can help you to see life in colour again.

Good luck with it all.

Alison

I am on rebif and feel bit the same and told my ms nurse I wanted to stop as don’t feel it’s making difference. V v hard to tell. EVERYONE says stick with it so that’s what I am doing. Try if you can to remain positive. Everyday they are making in roads to more effective treatment and even a cure

There was a post on here earlier in the week - someone who had changed from Rebif to another dmd - she/he said what a difference - they were feeling a lot better and had far less side-effects. Look back at the threads and see if you can find it.

Nobody wants to take a drug that actually makes them feel worse then the disease they are taking it for.