This Is MS Multiple Sclerosis Community: Knowledge & Support

We're trying to pull together some information here on a topic people don't hear much about: Lipoatrophy, or the loss of subcutaneous fat, due to the use of Copaxone. This looks like dents, or hollowed out areas, around the injection sites.

Does anyone on our site suffer from this? What has been your experience? Have you found anything that reduces its occurrence or improves the situation?

Aaron,

The MS Clinic at the University of Ottawa did a study last year on this very problem with people who use Copaxone. They found that about 45% of the users suffered from lipatrophy and stated that this was far too high a percentage of its side effect. Unfortunately far too few Copaxone patients are advised about this potential problem BEFORE they start using the drug and aren't told about how to recognize it early. Very often, by the time they seek assistance, the problem is too severe and the ability to relieve it is lost forever.

Harry

Aaron, I had a problem with this the first year I was on Copax, but not the last 2 1/2 -3 years. All the dents have since filled themselves back in. I'm not sure why they stopped happening although that is about the time I started warming up the C under my arm before injecting. This seemed to help with my overall site reactions.

Peter

Yes I do...its horrible! My poor thighs look like someone punched me and the impression just stuck!! Ive been on the Copaxone for 2 years now. I use the Autoject. I was on Copaxone back in1997-1998 and had no issues with it...I wonder sometimes if its due to the autoject?

Shared Solutions told me that the Lipoatrophy occurs in 1% of the Copaxone patients...usually women. I approached my neuro last week with the idea of injecting every other day (took in your msg) and he is checking into it...at least that would help reduce the indents.

I have them in my arms & belly too....but not as bad, Im guessing because my thigh muscles are bigger....its much more obvious. I actually noticed it while at the gym one day...in the mirror...and I was in shock.

Anyway...goodluck!
Dawn

Dawn,



Compared to what the University of Ottwa's MS Clinic discovered, I would think that the 1% figure is far too low for this problem. Reading comments from Copaxone users on the web also suggests the numbers are much higher.

Harry

Harry,

I would have to agree with you....I wasnt too impressed with the lack of concern on their part when I contacted them about this particular side effect. To be honest, Ive learned more about it from this forum and on the internet, then I did from them.

Dawn

Dawn,



The kind of reaction you got from them makes me shudder!!! The amount of money that this company is making from the sale of Copaxone to each MS patient and the lack of concern they show for side-effects of this nature is disgusting!!! I have read many similar posts on other MS forums and it happens far too often.

Harry

Hello!

I have experienced lipoatrophy from injecting Copaxone into my stomach area. I asked my doctor what caused it and he said it was from injecting in the same area too often. I would pretty much use only two different sites when I did this injection in my stomach. When I started rotating the injection sites more carefully eventually the dents in my stomach went away.

Alicia

I had to get off of Copaxone in May after only being on it for a few months. because there were simply no more injection sites left.

I had planned to just stay off the shots until the injection site dents and lumps disappeared, but it's been 4 and 1/2 months since the last shot, and I'm still lumpy and dented like a really old cantalope. And the lumps, while much smaller, are still tender . I mean, this just seems ridiculous. I don't see how people who have really severe reactions to every injection keep taking this stuff every single day for years!

I guess I could have stuck it out, no pun intended, but I also suspected that the Copaxone was actually making my MS symptoms worse. I didn't expect it to make things any better in the first couple of years, but I hadn't anticipated it making it worse. But whether it's a coincidence or not, I definitely felt worse and had more MS symptoms while I was ON Copaxone, paralleling the increasingly severe injection site reactions, as if the reactions were triggering my immune system in a bad way. And I'm sure doing better since I got OFF of it, so I guess Copaxone just isn't for me.

Also, because I have worked for years in a family doctor's office, and am the staff member who deals most with the drug reps, I can assure you that their under-reporting of side effects and risks is standard, and doesn't surprise anyone close to the profession. They exist to make a profit and I think we all know that they do. I'm afraid that I trust drug companies about as much as I'd trust a used car salesman with his bags packed.

flora, what have you switched to (if anything) since getting off the Copaxone?

I also suffer from this problem and I am relieved and disturbed to know that I am not alone. I only have it on my right leg in an area where I haven't injected too often; so I don't think it is from injecting in the same area a lot.

I now also get hives, but not in injection areas, generally near my wrist and ankles and a couple of times around my mouth and eyes.

Regards
Stoli

I'm not on anything these days, in terms of the injectable meds.

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

Hi I have copaxone induced lipoatrophy. I went to the dermatologist the other day and he prescribed a steroid cream to try to reduce the inflamation and swelling after injecting. He thinks that maybe it will stop the allergic reaction to the copaxone ( or the ingredients of copaxone such as the preservative that makes it possible to prefill the syringes). I had a very nice little discussion with him about this and asked him if this is common. From research, he says that the rate of it is more like 45% of copaxone users, all female. He has just recently had a wave of patients sent to him to investigate injection sites. I want to know if when people are injecting copaxone, are the ones that are getting lipoatrophy the same ones that experience pain/redness/ swellling/ bruising/itching/almost like a hive reaction? I have talked to so many other copaxone useres that say oh no... this is just fine... no pain, and no dishing out.
Here is the background info on me... I am 30 years old... have been doing copaxone for almost 5 years, I have been diagnosed with ms since I was 19 ( at 19 I had my first mri...and they said almost positive it was, but could not start treatment until I got more attacks to prove that it definately was.) I had another attack 6 years later ( Primary attack is ON, with fatigue, and I have full recovery so far). I had another bout of ON four months later, and that is when I started C. The injections burned alot when I did them at the start, and I got a bee sting reaction , that grew to be much bigger, hotter, redder, and ichier ( is that a word?) Now I have hard lumps at injection sites, that last for weeks, and are very hot red and painful, as well as the ohhh sooo beautiful craters. I guess I shoudl mention that I also use the autoject to inject my shots.

I also have a question, does anyone know of cases where the lipoatrophy stops being local and then turns to general ( like all over your body)? This was mentioned to me by the dermatologist, and he also mentioned that the gerneral lipoatrophy can cause a form of diabetes. Has anyone EVER heard that before?

I am going to post a link to show people what I look like, this is not me... but it looks simular to me... there is also a lot of good info on lipoatrophy here.
http://www.mult-sclerosis.org/news/Apr2 ... axone.html
Ok, that is all for now from me, looking forward to seeing some replies,
Novagirl

I was so happy to see your mssg! I have recently published a web page I think you should visit. www.multiplesclerosisblues.com
I have spent 2 years and endless resources battling Teva over this issue.
I went as far as reaching the Canadian CEO. Please please read the info.
My goal is to compile a list (which I will keep confidential) of people that are unhappy and submit this to the FDA and anyone else that will listen and perhaps then Teva will have to help us.
Thank you and I look forward to hearing from you