Luckily my rheum does treat based on symptoms. I did have a minor salivary biopsy and it was negative just like my SSA and SSB antibodies. I take plaquenil. I have plugs in my eyes and on restasis. I'm also on 2 other immunosuppressants in addition to plaquenil.

My original disease was very severe and most of the time that disease doesn't cause renal failure. (Like 1% of the time it does so I hit the jackpot). It normally runs its course and is over sometimes not even requiring treatment. I on the other hand had massive rounds of steroids (1000mg IV x 6 doses) and then 80mg daily x4 months followed by cytoxan infusions x 2 doses but my kidneys still failed. Sometimes that disease can come back but normally doesn't - if it does it tends to show a purpura rash and attacks kidney, GI, joints and skin (small vessel vasculitis). Back at the children's hospital where I was treated they always wondered if it was lupus and my physicians always said make sure they keep checking for lupus.

I am lucky that I live in a city with a top notch teaching facility but I don't think anyone realized how bad the dysautonomia was. At my hospital there isn't anyone who specializes in autonomic dysfunction. So I saw a cardiologist.

The new neuro I saw does only see autonomic dysfunction patients. So hopefully I am headed in the right direction.

I have talked to my doctor before about IVIG but maybe now they will be willing to give it a try.