Copaxone and lipoatrophy
 

I haven't seen this addressed here before, but I wanted to know how many Copaxone users have experienced the destruction of fatty tissue in injection sites.

I have indentations on my thighs as big as my hand and similar on the backs of my arms, on my hips and stomach. Unsightly, but not really a problem, until I discovered you cannot continue to inject in the "dead zone." I talked with Shared Solutions and the nurse I spoke to offered to send out a nurse to re-train me. I don't believe that I am doing anything wrong. I rotate the sites. The nurse then suggested I may want to see my neuro. I was going to see her, but do I need to have these areas assessed or at least brought to my drs. attention?

Thanks as always for your support and input.

I have indentations on my stomach. I use my stomach most often though because it hurt a lot less there. I have never really worried about them. I guess it wouldn't hurt to mention them to the neuro.

I stopped doing my thighs because of this, and also because of the gray color my skin was turning.
I have those indentations on my backside, none on my arms or tummy. The indentations on my thighs have largely dissipated since discontinuing using that as a site. It took about 9 mos. for it to fill out...

I am dented in my legs, bum bum, arms, and belly. I have very nice chunks missing of fat. when i showed it to the MD he said "so what?!" I said HEY! im melting! pretty soon there will be no place left to shoot! and he said "you are not a bikini model, and you need the meds, so I say keep shooting." I wanted to slap him!

I have recently stopped taking copaxone, and failed off of all the other meds, so I am bareback in the world of MS. its highly noticable when I wear short sleeves, or shorts. Im sorry I waited as long as I did to quit.

I didn't use copaxone, but I found even with Beta I got some nasty 'hail damage' on the tops of my legs- the dents seemed to be the result of those few injections that hurt like h*ll and stayed painful for weeks.

Lyn

Hey there Catch!

I am actually on Rebif. My neuro was going to put me on Copaxone 6 months ago but decided that wasn't a good idea since I am uninsured.

I have spoke with several women that are on copaxone and only have that as their complaint with the drug. They showed me the 'dead spots' that were like craters in their abdomen and thighs. They said our neuro said it is very common and really one of the only negative side effects with the drug.

I personally would have a huge problem with this as I already have a HUGE problem with Rebif leaving those nasty quarter sized purple/red marks all over my body.

Im thankful that they have been able to discover drugs to help slow the progression of our disease I really am, but I hate the disease modifying drug. They make my insides feel like poop. and the fact that I am injecting myself with human blood amino acid and CHINESE HAMSTER OVARY CELLS is rather disturbing.... eeEEEkkKKKK!:eek:
-Ana D

I will never ask what they make Copaxone out of (LOL) As it seems to be the best thing I've got. At least I'm old enough not to be bothered about the way my arms or thighs look.

This was condition was never discussed with me, as far as I can recall I only noted it as I read through some literature. I certainly never got the idea it was common!

Does anybody know what you do when you run out of injectible areas?:(

I feel a thousand times better since stopping the drugs! it was a horrible choice to make, but I am glad I made it. My skin has cleared up, my hair stopped falling out, and my tummy feels better. I was running out of places to shoot. I have huge dents everywhere.

Destruction of fatty tissue
 

I wondered what you decided to do about the lipoatrophy. I have the same exact problem and worry about what to do if i run out of places to inject. I saw my neuro today and showed her the dents and she suggested switching to Avonex, even though I have had 2 stable MRI's on the Copaxone.

Hi Catch!
Lipoatrophy is the reason I chose to discontinue Copaxone. It's a known side effect of that injectible med. I find it disappointing (and was similarly instructed btw) that a Shared Solutions nurse didn't acknowledge that fact instead of implying you were somehow injecting incorrectly.

I suspect your neurologist has heard of lipoatrophy associated with Copaxone before but I'd definitely bring it up anyway - I don't think everyone experiences it and it's always a good idea to keep the doc in the loop.

In my particular situation, I told my neuro it was the ONLY reason I was considering going off the drug. He heard my complaint, we agreed I'd stay on Copaxone for another 3 months to see if the situation worsened or stabilized ....and I promised to RELIGIOUSLY rotate the sites (which I was already doing but hey, I had to bring something to the table ;)).

Needless to say I still got divits, they bothered me and I quit injecting Copaxone. The neuro was supportive because we'd partnered in the decision so I guess that's my only advice: keep the doc informed and let him know what's working for you and what's not. It's your body. :)

becca44

One thing to reduce the dents is to not only rotate the sites, but also rotate around the sites. Try to use four points around each site, a little up, down, right, left. This will reduce the possibility of any damage. Keeping a log of each injections is a very good idea, computer is good for this.

I can't figure out why it happens because it doesn't happen all the time but whatever.

I skip my arms because they seemed to dent more often than other spots but my thoughts are I'm 45 freaking years old and although still in decent shape no one needs to see my bare thighs so...

I continue on with the medicine that I feel is helping me fight this miserable disease. Hopefully some day we will have better options.

i havn't experienced this yet and i've been injecting almost 8 yrs.
but i also have a lot of fat.

the problem i was having (i was using the autoject) was that i thought i found a viable site and would inject but the med wouldn't push in. i'd take out the autoject and it pushed the C onto the floor. argh.

i still have that problem from time to time. however, i started injecting manually and have done much better with that.

how do you inject?

That's the method each should adopt but it didn't matter in my case. I got the dents regardless of my attention to detail regarding the sites (and the areas around them).

I love that some people don't get lipoatrophy - I just wish I was one of them. I'd still be on the drug for sure. :/

Thanks wkikta.

I was extra careful and rotated brilliantly. I used new areas, old areas, shot deep, shot shallow, it didnt matter. the stuff was melting the fat pad right off my thighs and bum. The MD said it was not enough to pull me off the meds because I had no other meds to go to. After a while the side effects of Copaxone caused me to set down the needle. Even with perfect skin I couldnt do it anymore.

In my nearly 3 years on Copaxone I was about as careful about rotating injection sites as anyone could be. I kept charts going, a page for each part of the body I was using, and on each page I mapped out 4-19 injection areas and wrote the date in the box for the area every time I used it and made sure that the next shot for that body part was nowhere near the previous shot.

I have lipoatrophy dents though. I mainly did manual shots but switched to the autoject for the arms after a couple of years.

Some people get these dents, and some don't, apparently.

I was concerned about running out of places to inject though the lipoatrophy wasn't my reason for stopping Copaxone. I just didn't think it was going to help me. And it was causing some unpleasant bowel problems.

Fascinating! I never started injecting until 2 weeks ago. I passed up Betaseron for MS when I read about "depression" coming from it. But now I have to inject Intron-A for another disease, Polycythemia Vera, 3 times a week. So far, no pain or dents in my abdomen. Guess it's fat enough to handle it? But I've only done it 2 weeks. I have the INtron-A to cut back number of platelets in my blood; it is not for MS.

I also have lipoatrophy from Copaxone. Every area of my body where I injected is covered with dents and areas of lightly grayed skin. I religiously rotated my sites, but it didn't seem to matter. After nearly 5 years, you can imagine how my skin looks.

Now that I have quit Copaxone, I'm hoping I don't have to go back on it.

The only hope for the dents is that usually a few years after stopping the shots the dents do tend to shrink and/or go away.

its been six months and ...the same. no improvement in my dents. They are deep and they are ugly. I spoke to the neuro a couple of days ago and he said "when fat is gone, its gone. it doesnt regrow or reshift, its permanent, sorry"

I guess my bikini modeling days are over. :rolleyes:

NOOOO, Jalee, not our Bikini Girl...EEEEk!!:hug:

I wish I hadn't crashed a few years back and lost all my pictures, I had a lovely Bikini picture of you to post.:D:p:D

The fat is gone? What if you start a major effort to get more? Maybe the dents aren't all that bad.:rolleyes: