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Goodbye RRMS, Hello SPMS (apparently!)

Well I went to the Neuro’s last week, he seems to think I have now entered the SPMS stage of ye olde MS.

I agree with him that all the signs point to it, an MRI littered with lesions, a lack of relapses, 20yrs in to MS, nearly 40yrs old, can’t do as much as I once could.

So the upshot is that I am to be taken off Rebif, I’ve been on it for 13yrs so I am a bit concerned regarding this, before rebif my life was one big relapse, but since been on it i have been able to get on with life.

Anyhow I am obviously a bit concerned that the relapses will start again, as you would be.

I just aren’t 100% sure in my mind that it is SPMS yet, I can still walk not bad, I do get a lot of nerve pain in my legs though.

Has anyone else on here been taken off Rebif after so long, and how did it go.

Also there doesn’t really seem to be an exact science behind the change of diagnosis.

Dont get bogged down by names I think they use names for whatever stage we are at in 1993 I was misdiagnosed until 2006 which they then Dx me with SPMS with no treatments and no relapses but last year was told I’d had 2 relapses in a year news to me I thought I dont have relapses, so now im on copaxone for wait for this RRMS, I thought it went one way not backward’s so am really confused by all this MS lark what I’m trying to say is they give us a Dx which clinically it it and not What it actually happening to us.

Im not sure now if ive confused you even more ive confused myself big time.

Al x

Hi

Yes I agree it is confusing. I have also been told that I may not be able to stay on Betaferon. I’ve been on it for around 2 and half years.My walking is slow and I keep having MS flare ups.Neuro says if I cannot do the walk of shame (couldn’t last week), I no longer qualify. I am to have steroids and a course of physiotherapy and he will consider me again.

I have a friend who has been on Rebif for over 10 years and came off last year; although she was reluctant to come off of it, she has been ok so far with no relapses. She was told that if the relapses came back she could go back on it but so far so good.

Good luck

Wendy x

Hi

I can really understand your concern. I was on Rebif for over 10 years and was taken off it over a year ago.

I think it took me a while to come to terms with no medication. It also coincided with my care being transferred to a Center of Enablement. So I felt for a bit that I was being put out on the scrap heap.

However I do not miss the injections , or trips to the hospital for check ups,I have had no major relapses. So I would agree with everyone else as to try not to get bogged down with names.

I do all I can to keep as well as I can.

I hope you keep relapse free as I believe they could put you back on medication if you start relapsing again.

Best wishes

Janjan

Remember Rebif (and the other interferon drugs) only reduce relapse rate by one third and don’t slow progression of the disease at all. This means it won’t make any difference to your long term prognosis if you come off the drug. And if you haven’t been having relapses, that is most likely because of the stage your disease is at, not because of the effects of the drug - the drug just couldn’t stop all your relapses.