Solaris
 

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

Welcome to NeuroTalk :).

I hope that other members will be able to offer you feedback (I don't know enough about MG to say much that is helpful).

Best wishes.

I know someone who used it with excellent results. Really life-changing!

We often need the "big gun" meds if nothing is working and quality of life is poor. I've been using Rituxan with miraculous results for almost 2 years now. However, the potential side effects were so scary, I had to get to the point of being willing to die in order to feel better. Once I received the treatment, I only regretted waiting so long.

Good luck!

hi johntdyer
 

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

Covered by insurance? I read that it is $750,000 per year and is very effective for those with severe conditions.

update
 

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

Soliris working well
 

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