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Old 01-04-2018, 10:50 PM
Jimintulsa Jimintulsa is offline
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Join Date: Jan 2018
Location: Tulsa
Posts: 3
5 yr Member
Jimintulsa Jimintulsa is offline
New Member
 
Join Date: Jan 2018
Location: Tulsa
Posts: 3
5 yr Member
Default Anyone on Soliris?

I was diagnosed four months ago with MG. I was in crisis and went in and out of ER and hospital several times. Had plasmapharesis and then treatment was started, IVIG, Mestinon and Prednisone. I didn't respond to the treatment and continued to get weaker and eneded up having a feeding tube put in. Lost 50 pounds total before the tube. October 2017 Soliris was approved for patients that didn't respond to traditional treatment. I was approved by my insurance company and began IV's with Soliris 7 weeks ago. Since it is a new drug for MG there is no history to draw on to know what to expect. Case study information has been limited for patients and Dr's. My case manager for Soliris says to expect it to take about three months to see results. Just curious if anyone else has not reaponded to traditional treatment and what has your Dr recommended?
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"Thanks for this!" says:
AnnieB3 (01-08-2018)