Hello all
After 10 years on Copaxone my specialist wants to change me to Tysabri. The reason is … my last MRI shows that my lesions are bigger than my previous MRI. Im not too sure if there is new lesions… but the old ones are bigger and the doctor told me that my decease is active. My problem is that she is ignoring the fact that during 10 years I had no flare ups and my last flare up happen because I stopped the medication / I was not doing it like I should skipping some doses.
What do you guys think? Im so scared again!!!
My own experience isn’t much help, I’m afraid. I had been on Avonex for ten years and I knew it had stopped working towards the end because I was getting hammered with relapses and so didn’t need a scan to give me that good news. So I grabbed Tysabri like a drowning person grabs a life-belt. Your situation is trickier.
For what it’s worth, I think you can take comfort from having a neurologist who is keeping a hawk-eye on how your MS is behaving and is keen to snuff out signs of escalating MS before it takes lumps out of you rather than after. (‘Before’ is better, trust me.) I’m all for treating actively, but of course I would say that as a person whose MS is frankly and damagingly active when let off the leash. The fact remains that damage, once done, cannot be undone. There is much to be said for upping one’s game when MS seems to be upping its game. If you catch MS red-handed before it has had a chance to mug you, so much the better and it does sound as if that is what has happened here.
But that’s a hard sell to a person who feels he/she is doing pretty OK as it is. I wonder whether little more discussion with your neurologist or nurse might help you. It is so important for the clinician to take time to explain his/her recommendations for a frightening-sounding change. For instance, the neurologist might well feel that a few missed Copaxone doses are neither here nor there and that the signs of increasing activity on the scan are far too significant to be explained away by that. That’s the kind of conversation you need to have, I think, if you have not had it already.
Good luck.
Alison
Many thanks Alison.
Yeah is really scary to hear so many bad histories about Tysabri and then need to take a decision about it. Unfortunately I played really dumb and I skipped loads of Copaxone dosages (maybe stayed a good 5 or 6 months only injecting me once per week).
My worst fear is change and go down the hill and suffer with all side effects by other hand im afraid to stay on Copaxone and have another flare up. Im also thinking in stay on Copaxone for 6 months or one year and request a MRI and see whats the progression…if worst embrace the change if better keep it going.
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Look, you’re not the first person to ‘forget’ to stick a needle in him/herself quite as often as he/she, strictly speaking, should. I expect I’m totally wrong here (and please forgive if so) but it seems possible that you haven’t shared fully with the neurologist the pattern of your Copaxone use. If so, I can see it would be difficult for you to get a sensible answer to questions about what difference it might have made to stick more regularly to the Copaxone regime and, more importantly, whether sticking to the Copaxone regime in the future might do the trick for you.
One point for you to think about: if you proposed to stay on Copaxone and see how it went for a while, how likely is it that you would be able to stick to the injection regime? It seems to me that the most important thing is that you should be properly defended by something, even if it is one of the gentler drugs.
Another point concerns the tablet-form DMDs (no needles!) Might one of these (I don’t know much about them, I’m afraid, but there are plenty on here who do) be an option for you? Has the neurologist said what he/she would recommend if you decided not to take Tysabri? It is worth asking, I think. Plenty of people don’t fancy Tysabri, and the neurologist might have alternative suggestions, even if his/her first choice for you would have been the more effective drug.
Alison