Solaris and other best practices?
Hi,
I am so thrilled to finally start connecting with others. I was DX approx 2 years ago. I have probably had PNH for about 8 years given that I have had non-iron anemia and other symptoms for many years prior.
Anyways, I am in the larger risk for thrombosis (which I guess is larger clone size?).
I do not receive any transplants and am drug free thus far.
I am wondering if anyone that is currently on Solaris can comment -- how has it been? It seems like a major commitment and would like to know ahead of time the good, the bad, the ugly...things they don't share on more of the 'commercial' sites...
thanks so much,
A
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