Need Help with Remicade Approval- Urgent

[Guest guest]

Hello Dear Group,My wife 's 2-year battle with neurosarc is about to take a major turn: finally add CellCept and Remicade/Infliximab to the Prednisone. The Prednisone has helped the liver, spleen, lymph, and face granulomas, but it's causing her to lose bone, and it can't touch the terrible constellation of neuropathy pains and loss of feeling all over her body, or the autonomic neuropathy that threatens her heartbeat and breathing.I am very worried that our health plan, even though it's a good one, won't pay for Remicade because it's "experimental" or off-label (and expensive). The local doctor who'll administer the IV infusions doesn't know a great deal about sarc or neurosarc. The sarc specialist that's leading her care hasn't coughed up the journal articles and whatever it takes to prove Remicade's the right med. So the local doc is actually asking *us* for evidence that Remicade/Infliximab is an established way to treat neurosarc and Small Fiber Neuropathy. So this is a plea to any of you wonderful people who've taken Remicade/Inflix for your neurosarc, your sarc, or your small fiber neuropathy, your cranial neuropathy, your autonomic neuropathy, or your cardiac autonomic neuropathy (she has all that), asking you for good *articles* or other *references in the medical literature* or *doctor visit reports* from your sarc docs that you can point us to (or actually send us) to help get the insurance people to admit that Remicade is *normal* to treat what you suffer from. Thank you so much! This is an exciting time for us. Right now can't get down the stairs without stopping and sitting down and crying. But our goal that she set is to get back to 50% of her old self after 12 months. But it can only begin if we can get that Infliximab, since that's what her two sarc docs believe has the best chance at tackling the Small Fiber Neurop. Until she gets on the double whammy, it seems like more and more parts of her body will lose feeling each day (permanently?), and her heart will skip beats more and more often. Can you help?Thank you SO much. You have our very best wishes for your health improvement every day. We will find a cure. Until then, we have our families, our friends, our docs, and each other.In solidarity,Nickolai CowellNew Brunswick, NJnbcowell@...