Going off Rebif - Multiple Sclerosis Message Board

LUV2DANCE2 · 06-07-2007, 08:16 PM

Has anyone stopped Rebif (or similar meds)? I have been deteriorating although I have been on Rebif. I am interested if anyone has stopped their shots, and what happened. My neuro puts fear in me.
Thanks,
Tammy

PghGuy00 · 06-08-2007, 02:40 AM

Its a tough decision, but Ive been off of Avonex for almost 2 months now. Been noticing Im more fatigued ( but could be the summer heat has started earlier here too). However, Im not sick for 3-4 days a week either, and that is a good thing.

peace40 · 06-08-2007, 03:28 AM

I have just started on treatment (avonex) and can now relate how hard it might be to remain committed to the treatments. Yet as you say Tammy the fear of not having the treatments would be difficult to make. I know for me it is early early days (only 3 shots so far) and yes I can relate to PghGuy00 in that I am down for 3 - 4 days after my injection, which I did not expect. I am only hoping with time it might get easier. How long have you been on Rebif Tammy? I was just wondering as it is my understanding the treatments can take a while and they are not a cure in that you can still have a relape but does not mean the drug is not working. Maybe others will have more insight as they have been on the treatments longer than myself. Wishing you all the best.

MSNik · 06-08-2007, 06:12 AM

HI. Im on Rebif, and although I have NO DESIRE to get off of it, I just saw my doctor yesterday, who spoke to me about switching to Tysabri. He said that my next MRI will be the deciding factor (at the end of the summer). I am loving Rebif, honestly. other than the pain in the butt of having to DO the shots, after 3 months I went symtpom free, and now, after 9 months, I can do it in my sleep. I had a great MRI at 6 months, but since then, much like many of you, summer symptoms have kicked in, making me miserable.

WHats the reason why you are thinking of going off of it? Is it simply because you dont want to take the shots, or are you having relapse symtpoms? And, how long have you been on it. just an FYI, but Rebif and Avonex take 6 months to hit full blood level in your body and really start to work.

Hope youre ok..
Nikki

kimpossible67 · 06-08-2007, 06:22 AM

I'm not on Rebif but I'm frustrated as well, which I have discussed here. I was on Copaxone and then I stopped for over a week and then I started again and after 3 more shots, I quit. My main fear is the terrible lumps that the drug is leaving and I'm worried that in just 3 weeks of shots, how will my body keep up if I have no where to inject? I know I need to probably switch but I already have a struggle with depression.
The injection I took on May 22, the lump is STILL THERE. Smaller but there.
17 days later. That can't be right. Please let us know details and keep the faith