I also have nothing relevant to say about the drug Acthar. But, this part of D&C's reply,
"I see no FDA approval for any CIDP-related problems (FDA and manufacturer state it is for M.S. and some other non-CIDP diseases),"
reminded me of my own experience with a different drug, Mycophenolate, more commonly known as Cellcept. It is an immuno modulator that was developed for transplant recipients. It clamps down on the immune system to help prevent rejection of implanted organs.
Because of that immuno suppressive quality, it can also be effective against other intances in which the immune system needs to be held in check. Instances like...
I have been taking 2000mg of Mycophenolate every day ever since my series of plasma exchanges 2 1/2 years ago. The docs told me it would work with the prednisone and let me take less of that.
Anyway, the FDA only recognizes that drug's use in fighting transplant rejection. Medicare goes pretty strictly by what the FDA recognizes, so as far as they were concerned they weren't going to pay for it since I was using it for CIDP.