Forum

Serious Dilema

I have been taking Copaxone for 5 years now and I am so sick and tired of injecting everyday. I saw the doctor today about getting fingolimod but apparently I don’t qualify despite having a relapse at Christmas. They are going to book me in for an MRI to see what is going on and to see if I have any new lesions but I feel like having another relapse on Copaxone is going to help my case. I know that what I am considering is possibly irresponsible and unfair to the people that can’t get DMD’s but I don’t feel like I have a choice. I know how to bring on a relapse (in theory) but I have so many thoughts running through my head - what if fingolimod doesn’t work, what if I can’t reccover from this relapse or what if this is the one that puts me in a wheelchair :frowning:

I guess I don’t really have any questions but would like to hear other opinions on the subject.

Hi Kimmy,

Despite what you may think, I don’t believe you can bring on a relapse at will. In fact, if you were actively trying to, I’m almost sure you couldn’t. I don’t think MS is nice and cooperative like that.

I also don’t think you’d have any luck faking a relapse, as it would be hard to trick the experts into accepting you have problems you really haven’t. Of course, you could claim it was a sensory relapse, which is very hard to prove one way or the other, but I’m not sure most neuros will accept a purely sensory relapse as significant enough to prompt a change of medication anyway. So you might go through all the effort and stress of trying to blag it, just to be told that’s tough, but you’ve got to live with it.

Why can’t you just be honest about the Copaxone, and how you feel about it? It doesn’t guarantee you will get the green light for Fingolimod (I’m not sure many people will), but maybe you could try one of the interferons, which don’t need injecting so often, and perhaps might be more effective for you?

Quite aside from any moral aspects, I can’t see how all the stress and pressure of trying to aggravate or exaggerate your MS could ever be to your advantage. And all for a drug you’re so sure you want, but might not work any better for you anyway!

Why not wait and see what the scan shows? There might be a few options on the table, even if fingolimod isn’t one of them.

I know fingolimod sounds great - no injections. But when I mentioned it to my neuro in passing (I’m not on any DMD), she reckoned it had an unacceptable risk profile. So there is no “Get out of jail free” card. The DMD you may think you want may have a minus-side too. I’ve not heard of one yet that doesn’t.

Tina