I was sick for a decade, then I had a + lip biopsy ....4 years later I was diagnosed with neuropathy, which was 2 years before my ANA went highly +...so 6 years prior to seroconverting to a 1:1,280 speckled and nucleolar ANA, I had a + lip biopsy, which was done at U of MN lab, and blown off by the rheum at the private clinic, HMO system in my city....
Then I went elsewhere and the neuro said...'Hm, looks highly + to me", some rheums felt it was highly +, some said it was not indicative of SjS.
I don't know what I have to be honest with you, but, it is autoimmune, ANA remains highly +, C4 low, CRP goes up and down, platelets usually high, I have PN and almost every organ system has abnormality. I am on IVIg.
I was told by several rheums that plaquinel would not alter the course of my disease, and maybe, if I was lucky, I may 'feel' better. I decided not to take it due to the eye thing....and it not being effective for me. I did try it and itched like crazy, which is not unusual, given I have neuropathy and plaquinel is an itch inducer.
I don't know what to tell any one about the lip biopsy. My lip is still numb....they took 5 samples all had a gland. Then for years, it was and was NOT accepted as indicative of SjS. I was told by several rheums "We don't know what you have".
As scary as it is to have seroconverted, it helps to have doctors take me seriously, unless they are real jerks, and yes, there are some real jerks that want the ENA to be + too, and will blow you off if the ENA is not +. They have identified maybe 20 out of hundreds of possible antibodies, and then they narrowed that to the ENA and look at it as if it is the bible of autoimmunity. It's not.
This is a baby science.....it hasn't learned to use its legs yet. Nothing is certain. Plus, autoimmune disease can evolve....as mine did, over a decade.