Copaxone
This is another "stop you getting worse" treatment. It's also another daily self-injection treatment, but before you turn away you need to know that it's not one of the interferons (like Betaferon) and doesn't have the same flu-like or depression side-effects.
The whole package is presented better than Betaferon: the books and the video and the self-injector and the cold pack and the cotton wool and the backpack (the what?). The injection itself doesn't hurt but there is an after-effect like a bee-sting. They recommend (and I agree) doing it last thing in the evening and go straight to bed. Sleeping through the bee-sting feeling is okay, and next morning all's fine.
The 'COPAXONE® (glatiramer acetate for injection) Product Information" used to say "The mechanism ... is unknown". This however is more comforting.
Now I know its not meant to make you feel better but it does (marginally). Okay, it might be my imagination, but so be it, better is better, even if imagined.
Apparently they are trialing an oral Copaxone, but although I feel a bit like a pin-cushion, I'd rather this than take part in a double-blind trial: I can do without the placebo thanks very much. (I have doubts about participating in a double-blind trial, okay if other folks do it but not me. A discussion for another day.)
But after about six months on this stuff, yes, I was feeling (in general) better, but my balance was deteriorating - 'ataxia' I think it's called. And tremors had increased. Was it the Copaxone?
I looked up 'ataxia' and it appears that coenzyme-Q10 and N-acetyl-L-cysteine (NAC) in combination have a beneficial effect. I knew about coenzyme-Q10 but this NAC stuff... where would I get it?
From out of the blue, my friend Wendy rang up (an MSer who is a pharmacist - a good combination) and she said she thought there was some NAC in this stuff she got from the Life Extension Foundation. I'd never heard of them, but within 24 hours, I'd read their interesting website ... (read on!)
But in the end, I stopped Copaxone. Why? I had a number of niggling problems (see previous section, as well as trigeminal neuralgia) so I went to see a new neuro who had been recommended Although obviously very competent, her manner could be best summed up as 'abrupt'. But she advised: to stop taking it. Because I don't suffer relapses (and because preventing them is Copaxone's main use) there's really no point. And the neuro saw potential problems playing with the immune system.
Although I found her to be too abrupt. she did recommend me to a neuro physiotherapist.
(11/02) But here I am, I've started Copaxone again! I found a new neuro, whom I went to try the Milder treatment with, and... well... I guess you'd say I chickened out. Partly because I've tried various hare-brained schemes at this time of year and they've all turned out to be... well... hare-brained. But this doctor was keen to see me start on Copoxone. So I did.
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© Australian Philosophical Society for the Promotion of Useful Knowledge 2001