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Mycophenolate for autoimmune connective tissue disorders

Posted by JohnWBurns @johnwburns, May 11, 2016

2 questions about mycophenolate for autoimmune connective tissue disorders:

!) Has anyone had sudden upper GI symptoms like burning and vomiting? Is so, what was done?

2) Has anyone had any luck getting their insurance to cover off label?

Thanks,
Jim

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gonefishinmt | @gonefishinmt | May 11, 2016

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

REPLY
1 reply
JohnWBurns | @johnwburns | May 11, 2016
In reply to @gonefishinmt "Re Mycophenolate mofetil (CellCept) & off label use: My dermatologist tried unsuccessfully for several months to..." + (show)
@gonefishinmt

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

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Thanks very much for the response. Its not exactly affordable anywhere but Costco has the best prices by far. I've tried 3 other DMARDS with no luck so I'll give it a shot.

REPLY
gonefishinmt | @gonefishinmt | May 11, 2016

@johnwburns:

Please let us know how you fare with getting approval for CellCept and, if you do, how well it works for you.

Thanks,

GEG
@gonefishinmt

REPLY
davidwhitehurstbrown | @davidwhitehurstbrown | May 12, 2016

Behrend, Matthias. "Adverse gastrointestinal effects of mycophenolate mofetil." Drug Safety 24.9 (2001): 645-663.
http://link.springer.com/article/10.2165/00002018-200124090-00002

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JohnWBurns | @johnwburns | May 12, 2016

Thanks, saw that. This had a very acute onset and is passing. Doc doesn't think its due to mycophenolate. Suspect food poisoning.

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