Quote:
Originally Posted by johntdyer
Is anyone on Solaris ? I’m looking for feedback. It seems to be so new I can’t find anyone talking about their treatment on any of the usual groups.
So my history.. I recently underwent a relapse after we tried to ween me of Cellcept. After relapsing bad we went back to full dose on everything.
* 2000mg/day cellcept
* 20 prednisone,
* 60mg mestinon 4-5 / day
* Ivig 3 days every three weeks
However even with all this for 3 months I still often have symptoms. At my last doctor is suggesting I try Solaris since I’m not seeing anything from Ivig. I’ve been doing my research and the side effects look pretty scary. I have great insurance so if I proceed it will be covered 100%...
Any feedback from someone that’s been on the treatment ?
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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