Copaxone and Lipoatrophy - when to stop?
Posted: Sun Aug 10, 2008 11:27 am
Hi
for those of you who don't know me, been dx with MS 10 years. First 5 years frequent severe relapses, classified as an "interferon failure" on Rebif after 5 years. Switched to Copaxone against my neuros advice (he wanted me on Mitoxantrone but I said no because I wanted children) and to his surprise I have done fabulously well on Cop. I've had maybe 1 relapse a year in the last 5 years, very mild with no increase in my EDSS.
The big problem is lipoatrophy. My legs and butt are SEVERELY damaged now. I usually avoid looking at them but recently had a good look and I am horrified. I have seen pictures of Lipo but mine is much more severe than any pic - it's very widespread. It basically looks as if my whole thigh and legs to the side have been dented in or out. I have huge dep indentations on my butt too. I have not injected into any of these areas in 2 years and the damage is getting much worse. I don't want to go swimming and more or even look in the mirror. I am unable to look at myself anymore.
The bottom (ha!) line is that my MS is stable. It was going up to EDSS 9 during relapses 10 years ago, so obviously I can't go back to that. Do I just keep on Copaxone and ignore my lipo? I mean, all along, I have focused on the situation that my legs are WORKING now, and surely that's more important, but I am scared about the lipo too. I see my neuro in 3 weeks.
for those of you who don't know me, been dx with MS 10 years. First 5 years frequent severe relapses, classified as an "interferon failure" on Rebif after 5 years. Switched to Copaxone against my neuros advice (he wanted me on Mitoxantrone but I said no because I wanted children) and to his surprise I have done fabulously well on Cop. I've had maybe 1 relapse a year in the last 5 years, very mild with no increase in my EDSS.
The big problem is lipoatrophy. My legs and butt are SEVERELY damaged now. I usually avoid looking at them but recently had a good look and I am horrified. I have seen pictures of Lipo but mine is much more severe than any pic - it's very widespread. It basically looks as if my whole thigh and legs to the side have been dented in or out. I have huge dep indentations on my butt too. I have not injected into any of these areas in 2 years and the damage is getting much worse. I don't want to go swimming and more or even look in the mirror. I am unable to look at myself anymore.
The bottom (ha!) line is that my MS is stable. It was going up to EDSS 9 during relapses 10 years ago, so obviously I can't go back to that. Do I just keep on Copaxone and ignore my lipo? I mean, all along, I have focused on the situation that my legs are WORKING now, and surely that's more important, but I am scared about the lipo too. I see my neuro in 3 weeks.