complications with ITP

my husband has had ITP for 15 yrs. he responded to all the first line med's for a few months at a time, then ITP would return,after years of 6 months on treatment and 6 months off, they finally put him on anti-rejection med's which worked for 7 years, now they no longer work and our doctor was going to put him on promacta but his liver counts are too high. The liver specialist thinks he could have auto-immune liver disease, Is there anyone who has experienced this other than my husband?

Nannie,

Auto-immune condition will often cluster. What I mean is, it is not unusual for someone with an auto-immune condition to have more than one. The thing with ITP is that no two cases are the same. We all have low platelets, but everyone responds to treatments differently. That's why there's such a smorgasbord to choose from! Unfortunately there is no fail-safe treatment. And, as you well know, a treatment that seems to be working very well can stop working overnight.

I often feel like some sort of cosmic experiment. Just when things seems to be settling down, and I am getting back to "normal", someone changes the paramaters and everything goes "wonky".

I know this isn't very comforting, but I just wanted to let you know that you're not alone in this. The "ITP Roller Coaster" is just as much a mental ride as anything else.

Blessings,
Hauna

Hauna sez it somewhat accuractly: "I often feel like some sort of cosmic experiment. Just when things seems to be settling down, and I am getting back to "normal", someone changes the paramaters and everything goes "wonky".

After about 6 years of trial-and-evaluation, I think I am regimen #6 or #7 (I've lost count) I haven't tried everything but I have yet to find a regimen that is reproducible, predictable and dependable. SOoooooooo I keep up with the liturature and data for the next "latest and greatest" regimen.