I decided that l didn't want to keep putting this avonex into me any longer l haven't had any relapses for many years now and my specialist thinks my MS might of burnt itself out. He said l will always have MS and the symptoms of present time. It wasn't his decision to go of avonex it was mine. I have been avonex free now for 1 year and so far everything is good but still really having trouble with my feet burning and tingling. Has anyone else had a similar situation and how are things going for… read more
Been on Avonex since 1998 when it was a pretty new drug that cost about $2,500.00 per month. Now it's $9,600.00 per month!! I've been very stable. MRI in 2017 showed basically no change from MRI done in 2011. This is going to be my last month as at this point (20 years diagnosed and probably 10 years before that undiagnosed) I'm pretty sure I'm secondary progressive and the Avonex is a huge waste of money. I'm hoping I feel better in some way and just have to deal with a slow progression. I'm very active, work full-time, spend 5 hrs a week in the gym etc. I'm tired of feeding the big pharma monster. Biogen comes out with a new drug every other minute. Seems to me MS is a huge money maker.
I am on Tecfidera which is the latest oral that has been approved. I have had minimal side effects. Prior meds included Copaxone, Rebif and Tysabri. All were O.K. The key is to make sure that you don't get taken off one without being placed on another. I was taken off of Copaxone due to a site infection by a prior doctor who did not put me on anything else. 4 months later I had a exasperation and ended up in a nursing home for 3 months. I had full functions (walking too) prior to the incident and now I am wheelchair bound and only able to use my left arm.
Was on Avonex for 8 years.(that was nine years ago) Being that my lesions are in the cervical spine and only 1 in the brain, that none of the DMD used for MS have been tested on the cervical spine and that all the data speaks to the only the brain made the decision to go off of it. Had 3 back to back exacerbations last year all due to high fever, UTI or stress and no new lesions being on a DMD wouldn't have prevented them from happening. Had a lot more data that I shared with my doctor. He said officially he had to recommend I stay on a DMD. Off the record he said he couldn't find fault with all the data I presented.
It is your choice but be sure to talk to your Doctor first. My doctor never said yes or no but l feel he is ok for me to be off avonex because l haven’t had any relapse for years now. I am 65 yrs old. Good Luck
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