LIPOATROPHY?!

[DiannaKw]

NO THANK YOU! I have no doubt this issue has been raised and discussed here in the past, perhaps on multiple occasions - but i'm going to insist on this topic rearing its ugly head again.

http://www.mult-sclerosis.org/news/Apr2004/FullTextLipoatrophyinPwMSUsingCopaxone.html

http://ms.about.com/od/glossary/g/Lipoatrophy.htm

seriously? I am NOT okay with this!

Just when I thought I've finally accepted the reality of having to medicate myself for what could very well be the rest of my life, just when I thought I've finally made a decision that I am at least a little confident in and comfortable with, I happen to stumble upon this apparently COMMON "little" side effect (only a brief mention of it, almost in passing in the literature is was given, and in much of the information I've read about Copaxone online). I'm devastated. I thought Copax was so right for me; it addressed many of my foremost concerns, unlike the interferons.

I called my MS nurse today, and told her voicemail that upon further review and research, I feel I may have made a mistake choosing Copax. I feel awful. I can`t stand myself being so shallow, so vain, so superficial... I know retaining use of my limbs trumps the way I look - especially since I've been so adamant and hell bent over being strictly "big picture" - but I'm almost as body conscious as i am ``brain conscious`` ...not sure my already somewhat fragile self esteem could withstand this kind of permanent disfigurement. Am I overreacting?

I still have every intention of beginning treatment, but perhaps with my second choice (Rebif)

[SarahL2491]

Not to fuel this fear further, but I considered Copax when i entertained a DMD and had friends on it, all of whom who stopped because of the skin problems, and I have not found any positive results online for repairing the damage.

This said, not everyone gets it, its like the Tysabri side effect of a possible brain infection, its a crap shoot and a risk you have to be willing to take.

I do agree with prior postings, if you are obsessed with it (and can be rightfully so) then I would venture away from it now not later

If anyone finds any positive repair potential, am sure you will hear it here!!!

[gigi913]

I wish I could go back in time and never started Copaxone because of the lipoatrophy.  I was on it for about 5 years, It has destroyed my stomach, hips and thighs.I only injected my arms a couple of times but I wanted to be able to wear sleeveless tops when it gets hot.  Now I cannot wear shorts, my legs look awful.  I have been on no medication for about 3 years,  I ran out of places to inject.  I am so self conscious.  Does anyone know if it can be repaired?

[beema36]

I got this ftim betaseron and rebif. Its not just from copaxine. I hate it. My arms legs stomach and hips all look terrible. I quit using my arms in hopes it would look better with time but ut hasn't.

[DiannaKw]

Thank you for your responses... it actually was a post on here featuring an injection site lipoatrophy horror story that initially caught my attention ( and scared the crap out of me )

I decided to look into it before descending into full fledged panic - and I certainly didn't have far to go in my "investigation" to find grounds for reconsideration!. When I entered the term "lipoatrophy" into a search engine, one of the first links displayed ( third from the top ) was an article called "Lipoatrophy, MS and Copaxone"

This did NOT help to dispel my fears. From what I've read, regularly rotating injection sites does not appear to help prevent lipoatrophy, and almost half of all people who are on Copax have it. Those aren't what I'd call good odds. I'm under the impression that this occurs over time, not right away. So I wouldn't be able to know if it's damaging my skin until I see the damage, and of course by then it would be too late.

Both of my parents have these indentations from immunizations they received as children in Europe. I'm worried that I may be genetically predisposed. Maybe, maybe not. Maybe if it happens, it will be so mild that I barley notice. Maybe not. Is it worth the risk considering i have alternatives? ( albeit, less desirable to me )

Like I said, I still have every intention of beginning treatment ASAP - Ill see what my MS nurse has to say on the matter when she calls me back.

Again - Although I still feel incredibly disappointed, I appreciate everyone's insight. Thank you for listening to the jumbling thoughts swirling around in my head.  

[JaneK1975]

Tx for posting, Dianna.

- Jane

[sllowe]

p.s. We don't talk about his enough! So, I'm glad you brought it up

[sllowe]

Hi Dianna,

Thanks for joining us. It surely appears those articles have given you just the right reason to panic. Please don't. While this can happen, technique can avoid a lot of it.

It's ok to feel bad for being temporarily vain - just don't do either for long haha. You don't need to beat yourself up over how your feeling - you'll find we do that around here and then snap each other back into reality best we can, lol
Just go for it. A couple red marks, and possibly some future indentations vs the chance of not walking or talking well in the future is too great a risk. I'll admit the injection site reactions I read about with copax scared me off too - as did the daily schedule. I just knew I'd not be faithful to that schedule.
Pick one you'll do.

I hope those articles didn't scare you off completely to injections. I'm on Rebif and the needle is super thin, and sharp. Goes in smoothly, and have been injection since 07.
Please ask anything and thank you so much for trusting us to get thoughts :)

See you around

[Lulu54]

Just a thought here - it is always possible to start on one DMD and then make a switch it you are not working out well with it.  You can do copaxone and see how your skin reacts and then make the switch if needed.  Not everyone has a problem with lipoatrophy.

BTW - lipoatrophy also occurs from insulin injections, but those folks really don't have a choice.

Good luck in rethinking this.  

[maxthecat43]

I used it for a while, and I have a couple of depressions under my skin as a result.  Some people have better luck though.  If for some reason you do have to continue to use this, just be sure to rotate your injection sites.  I have heard that some people have used this for years, with no serious problems.

And don't feel bad about not wanting this to happen to you.  No one wants this reaction.

Tammy

[Sidesteps]

That is one of the many reasons I chose Avonex/Rebif over Copaxone. My Neuro agreed Copaxone is very hard on the skin.

I primarily was concerned that the site irritations everyday would cause a sort of negative psychological impact and I'd eventually get myself overly worked up on it...like nausea with taking birth control. I still had concerns with the welts and lipoatrophy.

I can live with a few months of feeling "flu like" when I can medicate to help relieve those dide affects plus knowing I feel that way a lot anyway.