Thanks for sharing your thoughts, Lisa.
Yep, everything you said has crossed my mind.
The Sirolimus trial seems like a no-go for me right now, but I will reserve the final decision until after I see Dr Paquette. There are other trials that might be a better fit, too.
Since this is such a rare disease, and it needs research, I feel that it would be good to try something different for the good of others. But there is also a limit to that.
The taper I did was most likely too fast, even my doctor said that he might have jumped the gun due to my incredibly good BMB biopsy results 3 months after the IST. I was only too glad to cut back on that stuff, but the second time around, I will be happy to keep taking it for as long as it takes.
I understand the Europeans do a slower taper as a rule, and the stats I saw show a lesser relapse rate.... but I certainly don't have all the info....
I'm SO glad to hear your husband is doing so well!!!!! Here's to more of the same for him (and you!). Good luck!!!!