I think it is a good idea, as you are doing, to exhaust all possible treatments that don't have the potential risks.

I did have IV steroids for months....not good.

With a high ANA for over 3 years, given the patterns, I am getting a bit frustrated with docs, and feel I need a bit more oomph to the ivig, but, yet, I too, am really scared to step up to the big guns like cellcept, but I think that it is the next option.

Plaquenil is an itch inducer which for those with small fiber may really cause problems....it did for me.

I had the same battle with Restasis. An opthamologist had to prescribe it.

I think that insurers are not very knowledgeable about UCTD or SjS. They assume that UCTD means you don't have an autoimmune disease, on the contrary, you have bits of several. It is like 2+2+2=6....not 2+2+2=0. UCTD is a specific condition, autoimmune, usually consisting of diseases of several diseases.

Here is a decent summary. I think they stupidly named it 'Undifferentiated' when in fact, it is a distinct disease, and deserved its own name....and then named Mixed CTD, mixed, when it has its own antibodies. Undifferentiated should have been Mixed, and Mixed should have been named something else, RNP+ connective tissue disease or some other name, after some patient or researcher. Insurers see 'undifferentiated' and can't figure it is a seperate distinct disease, and they think SjS is dryness.

I meet a lot of UCTD criteria, except that I meet the SjS criteria, given I meet all criteria except SSA/B+. However, dryness will cause that lip biopsy to be +.

http://emedicine.medscape.com/article/334482-overview