I can't really help but, understand why you ask the question. Hopefully, someone on here will have been on one of the trials. The following link might help, it seems to be a promising drug for MG patients.

https://myastheniagravisnews.com/soliris-eculizumab-for-myasthenia-gravis/

Hi welcome to the group,

soliris is not an infusion it is a drug,given for mg. it came out few yrs. ago, the cost is exorbitant, beetween $550.000 and 4700.00 yearly,
when it first appeared, i check it and find dome side effect i dint like, also being excessive i decided against

check for drug side effect at drug.com.
best of luck, (fighter)

hi sorry because my computer went crazy, and i need to make a correction

when i entered the costs, the second read 4700.00 shold have read $700.000
these costs could be verifies at solaris costs, you enter at the search bar
good luck (fighter)

Those stated costs surprise me somewhat. Perhaps you could explain them? It's easy enough to understand clinical trial costs being so high $700,000, but to think that it would be considered worthwhile for any pharmaceutical to pursue such a costly drug seems crazy? Other than that, there are risks with much of the medication we with MG are subject - yet another reason to have a good Doctor.

I was diagnosed las may and ivig helped but finally on solaris have double vision hope it clears soon can talk have droopy eye but throat is good can eat now they also did blood exchange never again I had 5 weeks in a row and now on 1 x every 2 weeks lets hope. insurance is a problem I am covered good luck

That's so good to hear, let's hope it does the business for you.

Take care

Peter

Soliris is the name, not Solaris. It is an infusion, given weekly for 5 weeks, then every other week. Yes, there can be side effects, as with all medications. I have been on it for 7 months, no problems. It is covered by insurance (I am on Medicare) and it is covered completely.

Lynne,
Personally, I would try Rituxan. Much safer and seems to be the perfect option when other treatments are not working. Aka refractory. Consult your neuro about this.

Other option may be Plasmapheresis or prednisone. Make sure you are exercising and believe your treatments are working. This disease gets in our head and think positive. So sorry you have been dealing with this for so long.

Very best,
TJ

It was mentioned by my Neurologist but I am unable to get live injections to prep for the infusion so it is a no go. Sometimes it takes so long to see results but I rather the IVIG infusions. Yes, the costs are astronomical if your insurance plan does not cover majority or all of the treatment.