Hi guys, my Dr. ( lol) , suggested that we stop Copaxone because of the damage it was doing the the fat layer on my arms/thighs. Has anyone had and adverse reactions when coming off the drug. We want to see what will happen, he gave us his opinion, and then left it up to us. So,
the US , as going to stop.
and we are still looking into the other drugs, and please give me your honest opinions !!!
I think Avonex, as the lone intermuscular option of the injectables, is less prone to cause lipoatrophy. I'm not sure of Australia's timeline (my assumption based on 'Victoria' as your location) for Tecfidera approval or how amenable you are to taking such a recently approved drug, but I do think that Gilenya (another oral) is approved there as well and might be something to look into if injections are causing concern.
As far as transitioning to another drug or tapering the one you're currently on, I'm afraid I don't have any personal experience with that. But I do know that for various reasons people on this forum have switched drugs as well, so hopefully they'll be able to chime in on that!
No experience going off Copaxone though I've never heard of this being a problem. Suggest you call Shared Solutions as they ought to know and be in a position not just to tell you if there are withdrawal effects but if there are, how to mitigate them.
On another, related note: I'm curious as to why your doctor is recommending against giving Tysabri a try?
I'm coming off Copaxone as well. Part of the reason is I'm getting holes in my thighs and can no longer inject in my arms. Im switching to Gilenya and wasn't told of any side effects from coming off Copaxone nor that I needed a period of time to rid my body of Copaxone before starting the Gilenya.
Hi Candy, I was on Copaxone for several months,but I had to come off it because of adverser reactions. I didn't have any reactions to coming off it though. I didn't have a dmd for about six weeks afterward, then I went on Avonex. I don't have any personal experience with the newer drugs.
I can't comment about going off med's --- but I started Avonex 14 months ago. I love it! I lucked out and after the taper time frame have had minimal side affects. I started off with being super good about drinking all my fluids and pre-medicating with ibuprofen....within a few months I was only taking 600mg of ibuprofen at the time of my shot. Nothing else.
I have had 2 or 3 flares in since being on it. I am a bit overdue for a follow up of MRI's and Neuro-physical but I feel so much better than I did a year ago I am not complaining.
I would likely consider Tysabri if my doctor felt I was a good candidate only because I have heard that it can help heal lesions (there is proven regression of lesion load) and I'd LOVE a bit more stability in my vision.
Good luck to you... I really think it is trial and error. I would not have stayed on Avonex had my body rejected it. Good luck!
Other than getting sick of injecting myself with a large needle, I had NO adverse side-effects from Avonex. Occasionally I might get a TINY bruise, if I went in at a funny angle. Other than that I had no issues.
I see my neuro Friday and will most likely stop Copaxone next week so I start on Tecfidera. They said there was waiting period or problem stopping quickly from it. I have lesions on my c-spine and brain and want to go on something better.
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