Copaxone and Lipoatrophy (skin indentations)

[heidi]

I just found this site. I have been diagnosed since 1986 and very minimumly affected ( I couldn't spell before the ms) 3 years ago i was put on avonex and at 1/4 dose i was sick 5 out of 7 days. they switched me to copaxone and i have been on ever since. 18 months ago i stoped shooting in my arms due to brusing and pain and deformation of the skin. I have only been using my thighs and butt. i began to have swollen lymphnodes in my groin which i just had biopsied (no cancer! yahooo) also my obgyn was concerned about my legs and the pitts that were developing. I had never heard of lipatrophy. My neurologist did not even look at my injection sites the last time i was in his office, but the NP is wonderful and she was concerned. she recomended i see some md in nyc (an expert) because she could not get a straight anwser out of teven about me taking a break to give my skin a rest. I must say, i am dishartened to read about lipoatrophy. I do want to continue on my meds, 30 % is good, but at what price. its a good thing bermuda shorts have come back into style! Any body have information on reduction of dosage? every other day or taking a 6 month sebatical? thanks.

[elizard]

So does that mean you can do it every other day? Maybe. But I really question if it's worth it, if this lipoatrophy is this common.

[2gentle]

Hi there,

When I saw this post, I wanted to answer just so everyone will know MY experience on the e.o.d method of Copaxone.

Back in the day, I contacted Shared Solutions and asked them why "C" was the only med that had to be injected daily. I was told to call TEVA, which I did, and they sent me a study showing that by injecting eod, one actually did better, than if they injected daily.

True, it was a small study, and one that TEVA didn't really pay any attention to, but *I* did. I also showed the study to my neuro, w/the results hi-lited, and ask her what she thought of it.
She correctly assumed that I was already doing eod, and now, some years later, I STILL do them eod, and my last MRI was great.

My neuro said whatever I was doing, it was working, so keep it up. I intend to.

Unfortunately it didn't help the "dents" I have, as they have neither gotten larger, OR smaller-they are just there.

But injecting eod makes me feel much better, so I will continue to do them that way.

Please know I AM NOT recommending that one do this, rather I am just stating my experience w/the eod injections.

xoxox,

Gentle

[Rosey]

I was also on Copaxone. It left me with cellulite and changed musle composition (dents in my thighs but not where I injected). My neurologist said was lipoatrophy. I was using Copaxone in a combination trial and I don't recall reading any literature on these aweful side effects. Does anyone know of any treatment for lipoatrophy? Chris

[HarryZ]

I was also on Copaxone. It left me with cellulite and changed musle composition (dents in my thighs but not where I injected). My neurologist said was lipoatrophy. I was using Copaxone in a combination trial and I don't recall reading any literature on these aweful side effects. Does anyone know of any treatment for lipoatrophy? Chris

From what I have read, there really isn't much they can do for lipoatrophy once it has done the damage. That's why I'm so annoyed at Teva for not properly warning patients before they start on the drug. I've also read posts by Copaxone users who contact Teva about the problem and often get the "brush off" by them!!

Harry

[Wonderfulworld]

Hi Harry,
I agree with you.
I think Teva really need to explain the lipoatrophy risk much more to patients...it sounds vague on the warnings, like it only happens a rare few who don't rotate, warm/cool, whatever.
The support nurses were kind, but had zero useful advice, but I have a feeling they knew there's little you can do once it's started.
Still..I have done SO well on Copaxone, I will be back on it again like a shot once this pregnancy is over (no pun intended!).

[harryn]

I think there are different individual responses to all the crabs. I have been on copaxone for 8 years now with NO lipotrophy at all! On the contrary, betaseron (for 18 months) had caused aplastic anemia. Different strokes for different folks. - Harry N

currently copaxone, ldn and many supplements

[phred421]

I am not commenting on anything Teva has or has not made public in the past. We r just now at then end of our first month on Copaxone. Last week we recieved mail from them with general support type info in there. on the back on two seperate pieces on info there was listed info refering to the chance of lipoatrophy. Like i said before i do not know what their stand was in the past but they mailed it to us in print.

have a goone one,
phred

[jeletonskack]

I know this message board is ancient, but for people that are just discovering it as I did, I just want to let you know that I am in the same boat as most of the others- random lipoatrophy from Copaxone injections with the autoject. I started noticing dents in my thighs about 7 years ago so I stopped injecting there. Then on my arm I got this awful necrosis and basically a piece of my arm died and now I have a nasty looking scar... thankfully I work for a plastic surgeon and am getting free laser scar treatments! Anyway, I am switching off Copaxone real soon and going on Avonex, a muscular injection. But take heart, the dents on my thighs (and some on my hips) from a few years ago are all filling in, I can barely see the ones that are left, and most of them are gone. So... give it a few years and hopefully your skin will go back to normal!

[cellulitecity]

I have been on Copaxone for almost a year now. I found this site while looking for answers about all my cellulite I have been developing rather quickly over the last 6 months or so. I have always battled weight problems and did have some cellulite before, but nothing like this. The weird thing is, it's not just where I am injecting, but it has taken over my thighs(front, sides and back), my butt and now is creeping into my lower back. I had to stop injecting in my arms b/c of cellulite forming on the outside of my arms which I have never had before. It also left permanent dark marks (which I have in the other areas also) that spans about 6 inches long and 4 inches wide. That was only after 6 months on the drug. I have worked out steadily for several years now, but ever since this problem started I have been slowly up-ing my work out to what now work out 1 hour/ 4 times a week doing a lot of strengh training with free-weights, squats, crunches resistance bands, etc. The workout is very thorough and for as long as I have been doing it, my cellulite just seems to be getting worse. So what am I supposed to do now?

[lyndacarol]

Cellulitecity – You asked, "what am I supposed to do now?" Would you consider modifying your diet? I have heard several "experts" lately proclaiming that diet is more effective than exercise in sculpting the body. Gary Taubes, in his book Good Calories Bad Calories, states that the macronutrients (protein and fat) are necessary for good health and that the macronutrient, carbohydrates, is NOT necessary. Specifically, he denounces sugar. The Diet forum at this website has suggestions you may want to check out.

[cellulitecity]

Hey! Thanks alot for the advise--I definitely will check that out!

[felida]

@cellulitecity: absolutely right, same refers to me.

in my age, and not being too skinny, it is normal to have a certain "level" of cellulite. but it has never been as much as it began some months ago, after half year with copaxone.

and despite the fact that i am not eating more than before, my weight increased continuously.

acc to my neuro, these side effects are often heard but not confirmed by teva. i know from slim people that they lost weight with copaxone, but those that have not been too slim before, often increase it.

therefore i stopped it, after a couple of weeks using it eod.

[bamajeanie]

Yes I have Lipoatrophy primarily on both arms,both legs & hips!! Let's put it this way I'm in fairly good shape for 68 yrs old,work out & was always proud of the results.Now you will never see me in a bathing suit again or sleeveless clothes or shorter shorts because of all the lipoatrophy I have in these areas. I have been on Copaxone for 4 years & do use the autoject & really don't think the autoject makes any difference. It's the medication itself. Would love for someone to come up with a way for them to get better!!!!

Jeanie

[Kgentry]

I have been injecting Copaxone 3 times a week since August. I'm a runner and very active so I really don't have a ton of fat on my body. I've been injecting and rotating areas the best I could but I noticed two nights ago that I have lipoatrophy on my right leg. It is not very bad at this point but it did concern me. I really don't want my body looking like I've been running through a hailstorm for the rest of my life. I've been trying to read up to see if there was something that could reverse it but there are not many positive thoughts on that. Then I thought what about using a fasciablaster. I know that sounds completely bizarre but aren't you just breaking up the fat cells when you use that? Wouldn't it be best to use it so that it will move everything around and possibly smooth out your skin?