I’m having to change dmd, my nurse has suggested capoxone as the best choice for me.
Can anyone tell me if it hurts as much as they say?
Also very concerned about lipoatrophy, anyone had this?
Does it have an auto-injector, is it easy to use?
I’m not sure if I want to carry on taking these meds, but have a family, so not taking them would be selfish.
All thoughts/experience’s welcome. Thanks.
I started on Copaxone in 1997 when I took part in a clinical trial and have been on it ever since, so 16 years now.
Dilligent rotation of injection sites prevents problems with lipatrophy. I had some problems a few years ago because I kept injecting into my upper legs, but a session with the copaxone nurse got me back on track with the rotation and I don’t have problems now. Also, I don’t use the auto injector at her recommendation. I don’t carry much weight. I think a little bit more fat would be helpful when injecting!
Injections are easy and really don’t hurt very much at all, you get used to doing it. It takes seconds.
Good luck, whatever you decide.
Sue
i started on copaxone after diagnosis when i was in a big relapse.
it doesnt hurt, just a slight sting sometimes. some people take an anti-histamine for this.
the lipatrophy on my arms looks like muscle definition!
i have a bit on my thighs too but not a cause for concern.
it really does help if you have a bit of meat on your bones.
i have skinny arms and legs but my bum is my favourite injection site - plenty of meat there!
i use the auto injector and havent had many problems in the 5 years i’ve been using it.
a couple of tips:
make sure that the skin on the injection site is kept well moisturised. it helps the needle to go in easier.
choose a time and place where you are relaxed and calm. try not to get flustered. sometimes i still have to abandon the jab if i feel flustered.
the connections helpline is brilliant. it is manned by copaxone nurses - one even came out to me at home.
good luck
carole x
Really not keen on a daily injection, wouldn’t mind if it was 100% effective or even 80%, but a third of a reduction makes it less appealing. But I guess it’s better than a relapse, and lucky to be given anything! Thanks for your tips and advice, really appreciate it.
I’ve been on copaxone for about 10 years now and it seems to have kept me pretty steady to be honest and the daily injection sites are ok as long as you rotate them…literally takes two minutes and i self inject as it gives me more control…
Hi, I started Copaxone two wks ago. To tell the truth, I cannot believe how easy it has been. I started with the auto injector, couldn’t believe how easy it was. My first injection was itchy and stingy. They have been fine since then, although I have had a few lumps. They disappear after a day or two though. One week after starting the injections, I broke the auto injector!! I was gutted! However, that left me no option other than manually injecting!! I couldn’t believe the difference in the sites though. Since starting them without the auto injector I haven’t had any lumps or swellings. It is still early days though and for someone that was petrified of injections, I cannot believe the simplicity of them, I can’t believe that I’ve been doing them! Good luck with your decision. Debs xx
I was on copaxone for 5 years until a major relapse this year and a move to Gilyena. I have a bit of lipotrophy on my stomach but totally my own fault because of laziness with rotating my sites. What can I say my stomach was such an inviting, target rich environment (ie the fattest bit of me!) It also hurt less there so I always used it. Stomach looks a bit of a mess but hey after 2 babies and many stretch marks my bikini days are behind me anyway! My advice would be start as you mean to go on in terms of rotating sites but if one site really hurts ie arms then just give it a miss but be diligent about rotating the rest. Also, even though it’s daunting you do have more control if you just inject yourself without using the auto inject (the sound it made always made me tense up and I’m sure made it hurt more). Good luck xx
Thanks everyone, it’s really helpful to hear your first hand experiences. Perhaps I am imagining it to be worse than it actually is. Time to have a good think.
Like a few others I have been on Capaxone since 2006. I use the auto injector and find it very easy to use. The problem I am having is getting very sick and tired of doing it. It’s very hard to keep up with something that does or does not work. No one really knows if it slows down the progression. I keep up with it anyway for my kids more than anything, I really want to be able to stand with them during there high school graduation and their college graduation… Only 5 more years. Sorry, went off on a tangent there. Like others have said, it is important to rotate injection sites. The more meat the better. Good luck! Greg