I have been a Copaxone user for 20 yrs and have only small relapses. Ive been told its time to come off dud to lipoatropghy. I am frightened as I havnt been offered an alternative.Has anyone out therecome off Copaxone after a long time?
I think I did about five years on it, and then moved onto Gilenya. I don’t think I did a gradual reduction, I think I just stopped. Sorry I couldn’t be more helpful
Hi Nicola. Did you ask about moving to a different DMT?
I’ve been on Avonex for 25 yrs and relapse free but they want to take me off it too. The consultant said (yesterday) that they THINK long term use of DMTs could cause more damage than good. I am scared too but have been given a year’s grace to get used to the idea Avonex isn’t for long term use.
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Nope. They just want to wait and deal with it if something happens. It’s all the unknown for them and we are the ones who will be providing the info.
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I think I would be kicking up a bit of a storm and asking for a review of alternative DMTs and complaining that waiting to see if I get worse is not acceptable
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I did ask, however it seems it will be discussed as and when ( guess it depends on how severe I relapse)
Thank you. Every response helps x
Consultant said it was a “see saw” with long term use. If you stay on it you might be more prone to cancer and other stuff but if you come off it there is a possibility of a relapse. Only way to find out is to take some people off it and compare results. I’ve been on it for 25 yrs so I reckon they see me as a good candidate (guinea pig?). It should be our choice and I will deal with it in a year’s time when I get the review. Only good thing about being taken off it would be helping fellow sufferers.
Well! It is totally your choice and , if some sort of study is being conducted then I would ask to see the full details ( absolutely full formal details- not some brief description) including details of when and if it was submitted to the hospital’s ethics board.
Also, I would give the MS Society’s help line a call - amongst other things they deal with legal issues.
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I would want to be convinced that I had definitely and unmistakably n moved into the secondary progressive stage of disease and that there were good reasons for confidence that this would not (in my case) include the relapses that can occur even at that stage. In other words, I would want to be satisfied that I no longer needed a DMD to protect me from relapses. Otherwise if they wanted to take me off my DMD for another reason (like lipoatrophy) I would prefer to swap to another DMD.
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Saw my MS Nurse this morning. She again said I seem to be doing well, my 6 monthly bloods are always OK, I haven’t developed any antibodies to Avonex so I should stay with it. I asked about long term effects - she said these are pretty-very rare and as my bloods are always good it’s not something to be concerned about
Thank you for the update. My blood tests have always been good too. I’ve seen the report from my consultant and just mainly says she wants to review the matter in a year. Wonder how many people would have been persuaded to come off it by then?
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