Copaxone and Lipoatrophy (skin indentations)

heidi · Newbie Joined: Aug 26, 2005 Posts: 1

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 · Newbie Joined: Nov 09, 2006 Posts: 2

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 · Posted: Tue Jun 19, 2007 1:01 pm Post subject:

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
_________________
Every journey begins with a single step...Diane

Rosey · Newbie Joined: Jun 27, 2007 Posts: 1

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 · Posted: Wed Jun 27, 2007 9:54 pm Post subject:

Wonderfulworld · Family Elder Joined: Aug 28, 2006 Posts: 321

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 · Newbie Joined: May 31, 2004 Posts: 5 Location: florida

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 · Posted: Thu Jun 28, 2007 9:55 pm Post subject: new?

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