Copaxone and lipoatrophy

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Copaxone and lipoatrophy

Postby Miss_Cupcake » Mon Nov 15, 2010 11:37 am

I have only recently been diagnosed with probable MS, and I am trying to select which med to take (neuro is letting me decide). I was thinking that Copaxone was the way to go, until I started reading about all the lipoatrophy. Is there any way to minimize it? I know it is totally vain, and retaining the use of my limbs is more important than how I look, but I am young, and I am in good shape and I do wear bikinis.

So please forgive my shallowness, and tell me are there ways to minimize lipoatrophy? Maybe I would be better off with another drug like Rebif? I would consider Avonex, but I do travel regularly and sometimes the places I stay at are difficult to guarantee a fridge (i.e. small towns in Spain). Rebif and Copaxone are appealing in that they can be kept at room temp if necessary.

Thanks!
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Postby Wonderfulworld » Mon Nov 15, 2010 12:41 pm

No there is no way to minimise lipoatrophy once it starts. I have no doubt that the drugs companies, neuros and others will tell you it's all about rotating sites or massage/no massage, heating or chilling etc etc, but it is not.

I was on Rebif for 5 years and I had over 45 sites for injection and I rotated those injection sites every 2 days and kept a diary. I only got 2 tiny areas of lipoatrophy, so small they were hardly noticeable. My MS on Rebif was awful and my general health deteriorated badly so I changed to Copaxone.

I have now been on Copaxone for 6 years too and I have widespread lipoatrophy. I had 49 sites mapped out for the injections and again I was 100% diligent about rotating and I kept a diary. There is nothing that can be done if your body develops lipo, it is a reaction of some kind to the drug. I am now covered in lipo on my bum, legs and stomach. About 2 years ago the Copaxone nurse advised moving to other areas on my legs and letting the older areas of lipo rest. All the new areas have developed lipo too and I have attended a plastic surgeon who said fillers will not work. As long as I am on this drug the lipo will continue.

If someone had said this to me when I was 25 and body-conscious, before definite MS, I would have run a mile from Copaxone, but here is the rub. My MS has died down nearly completely on Copaxone, and I was considered 'worsening RR-MS' 6 years ago. My general health and my MS are excellent and so much so I had a baby 2 and a half years ago and I couldn't have done that years ago when I was on Rebif because my MS was so active. So I have no definite answer but I am staying on Copaxone for the moment because although I cannot wear a bikini and I hate the damage done to my body, I look back to the years before Copaxone and remember the MS running riot in my nervous system and Cop is the lesser of two evils.
x
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Bouncycat » Fri Nov 19, 2010 3:43 pm

It was good to see both of these posts. i too am recently diagnosed with CIS but have continuing symptoms and lots of lesions so i was encouraged to choose a medication. I have chosen Copaxone and although i am worried about the lipoatrophy, if there is a chance it will increase my chances of staying well and ambulatory i will take lipoatrophy as i have a 12 month old and would love to have another baby in the next few years. It is all very scary though. When will there be a drug with minimal side effects and is not intramuscular (or even an injection) :roll:
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Postby Stabilo » Fri Nov 19, 2010 9:39 pm

Bouncycat wrote: When will there be a drug with minimal side effects and is not intramuscular (or even an injection) :roll:


I am fairly new to the drugs as well. I have been on Copaxone for almost 2 months now and have had a pretty good run with it. Copaxone, although scary is not intramuscular, it's subcutaneous :) The stinging is really not as bad as everyone says.......at least not for me (everyone is different) Good luck to the both of you :)
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Re: Copaxone and lipoatrophy

Postby NHE » Sun Nov 21, 2010 2:07 am

Bouncycat wrote:When will there be a drug with minimal side effects and is not intramuscular (or even an injection) :roll:


I took Avonex for 10 years. The IM injections aren't as bad as they sound. One benefit was that there were no injection site reactions.

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Postby peppy » Tue Feb 01, 2011 1:09 pm

I have been using copaxone for 3 years now and inject a few inches above my tattoo as instructed by the SS nurse and dont notice any difference. It took about a year for the lipo to show up on my belly and deems to be inevitable... What I have noticed is that since '08 my symptoms have not gotten worse...
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Postby Bouncycat » Mon Feb 21, 2011 3:01 pm

Something my GP told me - he does not really know copaxone especially but does know about lipoatrophy as it is not something specific to copaxone (diabetics get it too) he said the keeping as shallow as possible (while being deep enough it does not flow out) will help preserve the underlying fat as lipoatrophy is the destruction of this. Something to think about.

I also found in one of my handouts on copaxone that it is important not only to rotate injections but that when you return to a site (such as left arm) to be at least 2 inches away from where the last injection was. So i rotate doing the furthest distance possible from the last injection sites (so not only the last one) just to be sure. For example, if i did top of thigh then next time i do that thigh i would do near the knee, then next time in the middle etc making sure sites have plenty of time to recover.

I have a total of at least 200 individual sites mapped out. for my arm alone it will be 40 weeks before i inject the same site (and i am calling a site about a 1inch area). So the more the better, and keep your distance from the last couple. Hopefully this will work out at delaying the lipoatrophy.
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Postby Stabilo » Tue Feb 22, 2011 3:10 pm

Hey Bouncy,

How long have you been using Copaxone? Just curious :) I, like you have several sites mapped out and have yet to develop any lipoatrophy, though I am not quite at the 5 month mark so we'll see :)
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." ~ Eleanor Roosevelt
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