I was told about this drug yesterday by a friend who has MG. Their friend is doing well on it (which was great news).

For those of you who are refractory (such as Erinhermes), this might be something to try for. There is a trial going on right now.

FDA Grants Orphan Drug Designation to Soliris(R) (eculizumab) for the Treatment of Patients with Myasthenia Gravis (MG) | Alexion Pharmaceuticals, Inc

It's very expensive!

It is very promising. They might be getting closer to finding a more exacting treatment for MG. Now that's exciting.

Annie

Phase II

A randomized, double-blind, placebo-controlled phase II study of eculizumab in patients with refractory generalized myasthenia gravis. - PubMed - NCBI

Phase III

Alexion Announces Topline Results from Phase 3 REGAIN Study of Eculizumab (Soliris(R)) in Patients with Refractory Generalized Myasthenia Gravis (gMG) | Business Wire

I love how they talk about MG being "debilitating" when they are doing clinical trials, but neurologists talk about it being "easy to live with" when we go to them for help!

http://alexion.com/research-developm...search/soliris

Thank you for posting this, Annie. The Soliris treatment sounds very hopeful and encouraging, although one worries about how patients will be able to pay for it. I'm on IVIG treatments every three weeks right now. It's helping, but I'm not sure I'll be able to continue due to the cost. It's really a worry with some of these treatments. They are so expensive. I know in the case of IVIG, it is very expensive to produce. But it is still a very awkward situation for patients, and I wonder how other patients manage it.

Best wishes to everyone out there - please take good care of yourselves, and I keep wishing you all the best.

Take care,
Erin

There's another Erin (Erinhermes) who hasn't been on for quite a while that I was thinking about for this. But, yes, it is good to know in case treatments don't work for you or anyone else!!

Annie

Oh sorry - you meant this message for somebody else! Apologies.

Take care,
Erin

Don't apologize! I meant it for everyone! I just know that some MGers are really doing poorly. This disease is hard on all of us, no matter what condition we're in at the moment.

I'm just grateful that there are people out there working on better meds for us!

Annie

I wonder for us Canadians if we'll have a chance to try it out, I'd be interested since RITUXAN doesn't seem to be doing much so far I've had 2 infusions of 1000mg each the last one being May 10th with no improvement in my conditions I still require a weekly PlasmaPherisis and taking a bunch of meds to keep things more or less under control...

I'm seeing my Specialist this coming Monday I'll talk to him about it and see what he says or if he's heard about it.