Discussions that mention enbrel

Rare Disorders board

Linda, I'm sorry about the diagnosis but I can't believe that the steroids are the only treatment option you were given! There are several drugs being used to try to keep the episodes under control. Even if the colchicine didn't help to stop the episodes, usually it is continued to keep amyloidosis from either arising or progressing. I know that the docs at the NIH are using a couple different drugs if the Colchicine doesn't work. They will use either Enbrel, or methotrexate, and there is another, newer drug that is helping some of the kids that Colchicine doesn't affect. I believe it is called something like anikirase, something like that! I'll look it up again and let you know. Maybe you could have your doctors contact Dr. Daniel Kastner at the NIH for guidance? It would be worth a try!