Originally Posted by lady_express_44

Kelly, it is too soon to judge whether LDN is going to work for relapses or progression, definitely. How long have you been at 3.0+ mg? Even if it DOES work in the longer run, it doesn't mean we aren't going to have a few relapses, or a little progression along the way.

I have found infections set off my relapses . . . so this is something you have to stay on top of, whether you are on LDN or not.

It almost sounds like your neuro as a vested interest in you taking Tysabri. Who knows what that might be (financial, or just a bet with a buddy to see who can get the most people on that med ), but he should not be presuring you like that . . . especially knowing your financial limitations. My neuro "mentions" other options . . . or at least she did for the first few appointments, but now she is happy if I am happy.

Tysabri has a record for reducing relapses by 68% (compared to placebo), but a reduction in relapses does not necessarily amount to anywhere near an equivalent reduction in disease progression. The same is true for reduction of enhanced (or virtually any kind) of lesion.

Long term studies have shown that the vast majority of people do not benefit in the long run (with a reduction in disease progression) from the drugs that we currently try . . . so we are using them to (hopefully) have less relapses, and (hopefully) less holes in our brain. But, they don't actually work (for most who try them) to reduce progression of the disease, ie. disability in the longer run. That's not good enough for me, especially if it is costing $100,000 a year!!

I would give LDN a year, unless you feel terrible all the time, or you get worse (not "old" lesions acting up, but new one's).

Cherie