Hi Sally,

Good to see you. I just have been busy with 3D life and not around the computer much.

But this news was so worrisome to me that I wanted to share it with others. Something like this - no matter how small the group -is something that will stop me from going on this drug until we have more information about this. Yes, I agree with you that we're not talking about a resumption in disease activity similar to former progression levels, we're talking about a speed up of activity. I think this even suggests that it might be more than a "catch-up" amount, so that it's not just a fast accumulation of all the activity that was held at bay during treatment (so in the end you're no better or worse off than you'd have been without treatment, but it reads to me like the treatment actually could speed up the disease process and make it worse than it would have been if you've never been on the drug.

I don't know if the headache analogy is right since we're no worse off afterwards for that rebound effect, it's just that the med makes it worse temporarily afterwards and it seems like we get the full effect of the headache - what was minimized before and what it continues to be, all combined at once. That's what I want to know, if it's a temporary speeding up so we're only worse off temporarily, or if we ARE worse off for having taken the drug at all, worse off than we've EVER been... so it permanently changes the pattern, or even if it's worse temporarily, it is MORE than it would have been than if we'd never taken the drug.

Not sure if that makes sense - it's kinda confusing to me as I type it.

So I'm relieved that it's only been noticed in so few people, but I would really like to see a larger group to really see what's going on. If there's a risk that you may end up worse than if you'd never taken it, then that's a very serious consideration for me. But if, having taken it, while your disease process might speed up afterwards but you'd still come up at a level you'd have already been at, then that might not be such a big factor in my decision to take the chance. After all, taking a chance that it might help versus the chance that I'd end up where I'd have been anyway, that's not so bad.

It does make me wonder if there couldn't be some clue in there as to what this disease is all about though, why this would happen at all.