Wednesday, August 27, 2008

Strike one was Copaxone ...

Strike one for me was the MS drug called Copaxone. This was my first choice for an MS medication; a decision I made while I was in the hospital for three days awaiting the diagnosis that I had already made several months prior.

Yes, it's a daily injection but it doesn't carry with it any of the side effects of the other three injections which are all interferons. Interferons can cause all sorts of wonderful benefits such as free increased depression, buy-none-get-one-free flu-like chills and fever, and a 100% off sale on any joint pain and body aches. Who in their right mind would bypass those freebies?

Copaxone wasn't supposed to do any of that, so I was all for it. I injected my first time on Christmas Eve 2005 in my apartment before I went out to a friend's house. I didn't wait for the nurse the company so generously provides to come and show me how to do the injection; I had the handy packet of information and I had watched the DVD that they provided so I felt secure in doing my first injection all by myself. (As an aside, if you get diagnosed with MS and you're deciding upon an MS drug or drugs, you will receive more information than you could ever want, all packaged in a big binder type dealio with maybe a little carrying strap to make it look ultra-cool!)

I used the auto-injector for my shots, which is a device that gives you a neato way of loading up your syringe (while twisting your body into the right position so you could hit that day's injection spot) and then hitting the trigger button so the needle comes piercing through your skin quickly and easily. I was a pro at the auto-injector.

My body didn't tolerate Copaxone well but I used it for almost two years anyway. I always had large, red, burning, itchy welts after injecting. It didn't matter if I used heat or ice, put gel or cream on after the shot or not, massaged the area or pushed down on it; those welts were there to stay. They came and settled in for weeks so you could pretty much always tell where my last two weeks' (or more) worth of shots had been.

I also had constant low-grade fevers because my body wasn't tolerating the drug well, the welts, and 5 IPIRs. An IPIR is an Immediate Post Injection Reaction. Nasty little buggers, these things come on fast and strong, ergo the immediate part of its moniker. For me an IPIR was within seconds of taking a shot where I would have difficulty breathing, my face turned red, my body felt like it was on fire, and my chest felt like someone was stepping on it. They would last anywhere from 5-20 minutes or so.

There was no predicting an IPIR, no reason for why they would happen when they did, but it was unpleasant the first time so I was smart enough to always inject with the portable phone near me after that. This way I could dial a friend, gasp out my predicament, and listen to them talk calmly while I tried to wheeze my way back to normalcy.

All of the MS injectable drugs are obscenely expensive, well over a thousand dollars for a month's supply, which for some injectable medications may only be 4 shots (Avonex) or maybe 12 shots (Rebif) or every other day shots with Betaseron. MS is not a disease that suits anyone well, let alone the uninsured or under-insured.

One nice thing is that Copaxone comes packed with little freezer packs that you could use again and again and a styrofoam box that can hold just enough food for you and your freezer packs, in the event that you choose to go picnicking!

I also received free, yes FREE, alcohol wipes with my Copaxone. Actually more wipes than shots so that I had a nice bonus supply in the event of any other minor medical malady. I did appreciate that.

Copaxone used to have to be stored in the fridge so that every time you opened that swinging door you were yet again reminded that you had an incurable disease, one that most people can't see, one that eats away at your brain and spinal cord like Pac-Man, one that is kinda tricky to pronounce which makes those of us even without speech issues sound like we're lisping.

Copaxone was strike one for me. I came, I tried, it beat me down. I moved on. Next on deck was Rebif.


Kelly Siobhan said...

Thanks for sharing your experience with Copaxone! I'm a newbie to M.S and this drug and I'm still learning about it. How did you feel it worked for you? Good luck with Rebif!

Weeble Girl said...

I liked Copaxone the best, except for the welts and the fever. It was easy to inject and I never missed a shot because you just make it part of your routine.

My last MRI on Copaxone showed more lesions, so that plus the other stuff, including IPIRs had the neuro asking me to try something else.

Good luck, Kelly!

SwampAngel65 said...

I guess I am really lucky with my Copaxone welts are gone within 2 days, and they aren't even big. And I've never had one of those awful "shortness of breath-omg-I'm gonna die" moments immediately after injecting. At first I was always waiting for it, but now I don't even think about it. I suppose it could still happen, though.

I hope the Tysabri thing gets straightened out and it's something that works for you. At least we're lucky??..that we have a few options for our meds.

Weeble Girl said...

So true, that we are lucky to live now when there are many treatments available to us!