hi john last visit at barrow in phx dr brought up my progression and felt that soliris would benefit me he currently manages 9 patients with soliris and said the results were amazing keeping exacerbation in check ,meet with him next week as i was hospitalized 3 times in last month ,talked with a woman who was on soliris for 9 years its used for PNH a bone marrow disorder ,she said no side effects just that it only worked 50 % of the time ,she is in a trial for a new drug phase 3 and gave up solaris and is doing excellent ,also on cellcept 1000 mg prednizone 40 mg,mestinin 60mg 3x and ivig 120gr every 2 weeks increased from every 3 weeks home infusion 2 days i also have a bone marrow disorder

hi just saw dr tuesday we are going to switch to soliris slight delay with insurance, as was sent to non participating insurance provider .hopefully will be straightened out by next week , dave

I have been taking Soliris for about 5 months. For me, it's magic. After my 1st two doses I felt like I was in 95% remission. So far there's no sign of it reducing the positive effects. Last summer I was fully functional on even the hottest days. It was a good feeling to not have to think about staying cool all the time.

I receive 1200mg every two weeks. There's a little sensation after infusion, but it's mild. Currently, you must be AcHr positive for the drug to work.

The worst part is the cost. If I didn't have great insurance I would have to pay $400,00 per year. My Neuro says they are working on some new drugs that will cost less.

I hope you are all doing well. I am almost forgetting about MG on many days. It's a good drug. Be careful to get all 'i's' dotted and 't's' crossed with your insurance company. I had to be my own advocate getting my Doc, my insurance company and the drug company (Alexion) on board.

Good luck. Be your advocate.
Regards