Hi,
As things stand, no, MS is incurable. Nobody can say they used to have MS. Anyone who does so is either a fraudster or deluding themselves (to put it politely). At the moment, the best any of us could say is that weāve been blessed with very long remission.
I hope that may change in the lifetimes of some here, although as Iām already 49, I donāt realistically expect to be around to see a cure.
I think stopping DMDs is a very separate issue from being able to say you used to have MS. As medicine stands at the moment, you have to assume you will have MS for life. I donāt mean to sound negative, but there it is. The cure has not yet been found, and if it was discovered tomorrow, it would certainly not mean weād all get it next week, and thatās the end of MS. These things take years in development.
So being an ex-Copaxone user would have absolutely nothing to do with whether you still had MS - you still would. That partās a definite.
As to how youād be without Copaxone - I donāt know. Touch wood, I havenāt relapsed since diagnosis over 4.5 years ago - Iām not on any DMD. Does that mean I can pronounce myself free of MS? Of course not. Iām aware every day that I have it, in hundreds of different ways. Not relapsing unfortunately doesnāt mean feeling well. I felt rubbish for years before diagnosis, and have felt mostly rubbish since, but know Iām still lucky compared to how it goes for some people.
Why are you thinking of stopping Copaxone? I donāt mean it to sound a judgemental question - Iāve never taken a DMD, so am certainly in no position to say anyone else should. Iām just curious whatās getting you down about it. Is it the injecting? Is it side-effects? If itās the injecting, I certainly understand your sentiments about that. I donāt think anyone can genuinely say they want to do that for life, even if they accept they might have to.
However, Copaxone is starting to look quite old-school compared to the newer drugs emerging now, several of which are pills. There is no plan (that I know of) to migrate people who are successfully on one of the old-style injectables as a priority. I think if youāve had excellent results on Copaxone, itās unlikely your neuro would propose a switch.
However, if you are experiencing side-effects, or the injections are really getting you down, it might be worth discussing what other options are open to you, as things are moving on, treatment wise. But I donāt want to give you the illusion one of the others might cure you - it wonāt.
Do you have an MS nurse (I do, but never use mine). Can you have a chat about all this?
Tina
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