As I have stated before, I was in the drug trials for Benlysta, the new drug approved by the FDA for lupus patients. The drug trial I was in was cancelled last month and so now I am not on it at all. My doctor and I discussed whether or not to get signed up for the IV infusions that have been approved. After much paperwork and other rigamarole, I found out today that my insurance copay will be 20% or up to $3800 maximum out of pocket BEFORE I can start infusions! YIKES!
I don’t know about you all but I do not have $3800 laying around. I was adivsed to get hold of an organization that can possibly help me. I sure hope they can. Benlysta was wonderful for me in the trial, but after time, the small dose I was on did not work as well as in the beginning. To actually get a dose that is decided by my weight and not a set small amount would make me feel good! It worked before, so I have no doubt it can work again with proper amounts.
So, off to beg for help and hopefully I can get started. Here we go on this new adventure. I will update as it continues.