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I hope you get some helpful replies Roxanne - I have copied your post to this section too. As the new drugs come out and start being used for lupus this sort of situation becomes more common - not being paid for unless the drug is licensed and approved for use with lupus.
There is certainly plenty of evidence that it does help many and means they don't have to use Cytoxan which has more serious side effects and problems.

Lots of Luck
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