Reply To: New To Diagnosis and at a loss as to how to handle.

[Community Member]

As a reply to your wondering about VYVART, check into my earlier comment awaiting moderation.

FIND AND JOIN a MYASTHENIA GRAVIS SUPPORT group in your area.   They all have  ZOOM meetings on a monthly basis.   You can ask any questions and fellow MG patients can tell you their experiences with various invasive MG drugs.   Also the MG SUPPORT Group   moderator often invites Solaris and Vyvant representatives who talk about what these medication treatments are.  Also in my recent Phoenix ZOOM meetings, speakers from both of these companies discussed what it is.

Also ask in the ZOOM meetings, if any other MG patients have tried IVIG, SOLARIS, or VYVART Treatments.   From what people are saying … all three of these are     …  being on IV needle infusions on a weekly or monthly basis for a least an hour for each infusion.   They are VERY PRICEY unless you have very good health insurance coverage.

I had  five days (five hours per day)  of IVIG intravenious infusions at the second hospital  … 8 months after I first had my MG symptoms appear and was finally correctly diagnosed by a hospital nurse 8 months later.

These three MG TREATMENTS are IV infusions.   They are not daily MEDICATION PILLS.  I take daily 2000 mgs of CELLCEPT and 180 mgs of MESTINON daily to be in remission now.  I was on PREDISONE for 10 months and my MG NEUROLOGIST finally got me tapered off of it.   Has very nasty side effects.   Weight gain (40 lbs plus), terrible insomnia,  and medically induced Diabetes II

So join your local MG SUPPORT GROUP on ZOOM, ask questions to see if anyone has done IVIG, SOLARIS or VYVART.   They will know what that style of treatment it is,  good and bad the side effects are,  how to negotiate best   … jumping through the hoops of the insurance paperwork, and what websites you can GOOGLE, to tell you what each treatment involves.       LISTEN TO your fellow MG survivors   ….  and BE EDUCATED.