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Old 03-27-2018, 03:32 PM
Rabbit63 Rabbit63 is offline
Newly Joined
 
Join Date: Mar 2018
Posts: 1
5 yr Member
Rabbit63 Rabbit63 is offline
Newly Joined
 
Join Date: Mar 2018
Posts: 1
5 yr Member
Default Info. On Solaris

Hi, I am new to MG too. I have been on Mestinon for 5 weeks. Initially worked great, but the last couple of days have been bad.

Solaris is also used for Atypical HUS (hemolytic uremic syndrome). Another autoimmune disease that is extremely rare. My brother has it and almost died from it last year. He was given PLEX treatments until they got approval for Solaris. I am sure you know it is extremely expensive. I believe it was over $50,000 per infusion. He had multiple treaments, but it was too late, the disease damaged his heart, lungs and he now is on dialysis. If you search hemolytic uremic syndrome and Solaris, you will find a support group which I believe is sponsored by the drug manufacture of Solaris.

I am curious if you are MuSK positive?

Hope you find some help.
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"Thanks for this!" says:
AnnieB3 (04-03-2018)