Re Mycophenolate mofetil (CellCept) & off label use: My dermatologist tried unsuccessfully for several months to obtain Medicare coverage for CellCept to use for my Lividoid Vasculopathy (LV). Despite several written appeals to Medicare then to the Independent Review Board for Medicare coverage disputes, it always came back to the fact that LV was not a listed use for CellCept. Some very closely related diseases are a listed use and my Derm MD tried to convince the reviewers that he believed it should also be successful for LV.

Their argument was there were no peer reviewed studies or other substantiated evidence demonstrating this use to be successful, so no coverage. In the end we found other meds that seem to be working for me. CellCept is very expensive, and would have cost us nearly $1,000 per month without insurance coverage. You may have a different experience with another insurance, but if you pursue it, be prepared for a battle.

Good Luck!,
GEG
@gonfishinmt