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Old 05-23-2010, 09:53 AM
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agate agate is offline
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Join Date: Aug 2006
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15 yr Member
agate agate is offline
Senior Member
agate's Avatar
 
Join Date: Aug 2006
Location: Wild West
Posts: 1,016
15 yr Member
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I was on Avonex for 3 years. I didn't mind doing the shot but had problems with flulike symptoms in the first year or so. I never missed a shot. In the third year some "bowel urgency" issues I'd had began getting noticeably worse. Then one night a few hours after the shot I passed out and fell.

Interferons were out for me from then on, and after a year or two of thinking about it (these things take time), I decided to try Copaxone.

It was going beautifully, I thought, but some time in this last year--my third year on Copaxone--I again began having big problems with "bowel urgency."

This was getting too uncomfortable and too hard to deal with, and so I went off Copaxone about a week ago.

If I thought there was a remote chance it would help me, I'd stay on it, but I don't think there's any real likelihood. They don't know enough about what these drugs do to people my age, people who've had MS as long as I have (over 30 years), or people with SPMS.

In fact, I've never found any evidence that they've studied what the ABCR drugs do to people with progressive forms of MS other than a few that say they don't help.

Also, I live alone. The IPIR some people have while on Copaxone never happened to me, but I was always concerned that it might. I know it's rare, and I know some people sail on through it. I have two phones and a cellphone and an emergency pullcord in my apartment but still--who wants to go to the ER?
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MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24
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