NeuroTalk Support Groups - View Single Post - Copaxone site reactions...some questions/concerns

FaithS · 12-24-2008, 04:22 PM

Copaxone has been a nightmare for me. I was on Betaseron for 5 years, with few side effects, and very tolerable site reactions. But, alas, it was not effective for me at decreasing fx and severity of flares.

So, I switched to Copaxone in Sept. I've had HUGE problems with site reactions. Burning, often for up to 30 minutes after injections; I use a cold pack and that helps a lot. In my abdomen, I also experience itching, but it doesn't seem to be as severe as what Debbie describes. I do get the swollen, red and warm, no matter where I inject, and, whether I inject manually, or with the auto-injector.

Also, at every site other than my abdomen (thighs, arms, hips), I ache for 2-3 days after an injection, like a tetanus shot. The site hurts when I bump it, it hurts when I roll over in bed, etc., etc. I medicate w/ Ibuprofen every 3-6 hours, even through the night, for 2-3 days after an injection that is not in the abdomen.

Suffice it to say, I just can't do this. I've talked to Shared Solutions people mulitple times over the phone. I try their tehnique suggestions. Nothing helps. Some of their suggestions make it worse.

Finally, I requested that a nurse come out and re-train me. We did it in my thigh. We used the auto-inject; I've tried it both ways -- didn't use the auto-injector with Betaseron. She pinched some skin, and set the depth at a 4. My legs are somewhat thin, but I've also had trouble in my hips, which are not thin. So, I don't think that hitting muscle is the problem, at least not all of the time. Even then, with a nurse's diligent assistance, nothing changed. Still had pain for days, following thigh injection.

Shared Solutions does not like patients to use sites more than once a week. So, I currently use 4 different sites in my abdomen, including above the belly button, and give injections only 4 times a week. Shared Solutions does not recommend using above the belly button, but I have lots of fat there, and Betaseron people say it's OK. So, because they are both sub-Q shots, I tend to believe it's OK. I inject only 4x per week because I am concerned about possible lypoatrophy (permanent dents in the skin) from over-use of the same sites, and don't want to be able to not use my abdomen as an injection site in the future.

Will talk to my MS Specialist about that when I see her in January. I've read research that indicates that every other day Copaxone injections are just as effective as daily. And, yes, I know the study is a small sample. And, I know that Shared Solutions can't recommend anything that isn't their protocol, etc.

But, I am simply no longer willing to hurt that much.

I'd like to stay on Copaxone. I didn't like any of the other med options given to me at my most recent visit to my MS Specialist. But, I'll only stay on it if I can do it my way. 4 days a week has got to be better than nothing at all.

~ Faith