WHAT DO YOU DO?

[Waydwnsouth1]

I was dx just a little over 2 years ago after 10 long years of searchingfor answers. I have been on Avonex, am currently taking Copaxone and my neuro is currently considering changing me to Gilenya. Needless to say the Avonex did not work, the Copaxone is not working, that is why he is considering the switch.

My question is, since I have been on two DMD's and may be switching to a third what happens if the third does not work. Does one stop taking DMD's altogether and let nature take tis course? After 3 DMD's it would seem that the MS is progressing at a rate that no DMD can slow it down. If one were to switch to a fourth DMD what would be the fourth alternative?

From what I understand Gilenya has a better efficacy rate than either Avonex or Copaxone. So if the Gilenya does not work what do you do?

Please any response would be greatly appreciated. I am not giving up on the Gilenya because I have not even started it I am just thinking about the future. Somehow I feel Gilenya would be my last ride as far as DMD's go.

[MSer102]

Well it seems like 3 is a magic number but I don't think its a good reason to stop DMDs all together. The newer MS medicines all seem to work differently from the others so I think there's a good reason to keep trying them to see which one might work best for your own "flavor" of MS. Maybe none of the DMD's will work to slow down your MS but you won't know if you don't keep trying.

And I think another reason to keep trying is because the first two medicines you were on have some of the lowest rates of effectiveness of all of the DMDs. I don't think it makes sense to try the least effective medicines and then give up on all of them because they didn't work.

And remember that sometimes people have to stop a medicine that works well because of side effects. So I think its a good idea if you and your neuro have another plan in case Gilenya doesn't agree with you. But which one comes next depends on your health and what side effects your willing to deal with. If your JCV negative Tysabri could be the next choice because its still the most effective DMD available. But there's also now Tecfidera and Aubagio. For chemo drugs there's Cytoxan and Novantrone and Rituxan. One of my neuros has MS patients who are doing well on Cellcept. Campath is being used off label for MS even though the FDA has asked doctors not to do that because of safety questions. They all have pros and cons so it depends on you and what you and your body will tolerate.

This is the best time in history for medicine options for MS. So with all of those medicines available that all work differently why do you think that there's something about the number 3 that makes you want to stop there before you've even tried the more effective medicines?

[Thinkimjob]

Evening. Honestly, I do not know. There's the side effects vs fewer flares trade-off.

If I was starting out, I'd probably go for BG-12, but that's because my initial choice of Beta was based on a fear of needles.

Can't have Gilenya due to the family history of dicky tickers.

Taking Copaxone, have been for, ooh a long time, probably did some good, might not have. Who knows?

Fifteen years in, kind of stuffed, can still walk (hobble), can still work (not enjoying it, really, utterly exhausting, except for getting the police report for the paper each week - they "lurve" me.

Court report - they'd kill me. Why am I in the paper? Well, that would be the meth you were selling...)

You probably have to take something, on the off-chance.

Dunno, MSer102, . I've been hearing about how this is the best time for MS etc forever. No doubt it is better today than it was 40 years ago, but it's still not that flash.