Has anyone had a Rheumy diagnose you with primary SJS and then another Doc suspects Lupus as the culprit or another autoimmune issue? After an 1.5 hr thorough examination the New Doc is requesting all new bloodwork and a chest x-ray be done before our next appointment. He mentioned potentially putting me on a monthly intravenous drug that helps Lupus patients "that isn't dangerous"....I didn't ask him what it was since he wants to see my latest round of labs before he determines next steps. Does anyone know what this not so dangerous drug could be?
TIA!
Sorry to hear you are in diagnosis limbo. The IV drug he was referring to is probably Benlysta.
Hi :)
My rheumy says I'm on an autoimmune spectrum. My blood work suggests lupus my my symptoms are those of Sjogrens (measurably dry eyes and mouth) - aches and pains, connective tissue issues go with both diseases. Blood work does not go with SjS but that is still what's written in my notes.
Both conditions have a lot of overlaps.
Take care - Scottie :)
I was told that my blood indicated either lupus or Sjogren's. Because of my dryness my rheumy thought I had Sjogren's. I see a new rheumy in March since my old one retired. So we will see what he thinks it is.
Funny, it was my endocrinologist who was most concerned with my antibody levels, and he was the one who recommended my rheumy.
I hadn't seen the endo in a few years, as my thyroid was very stable. I saw him a couple of weeks ago after my hair started coming out in handfuls, my legs retained water and I gained 15 pounds in 2 months.
I had brought my labs for the past year. He asked about my antibody levels, and was surprised that the rheumy hasn't tested them in the last 4 years. Dr. Endo has listed SJS and possible lupus in his diagnostic notes.
How often do you guys get antibody tests? I would think only when new symptoms develop. Am I wrong?
Another random thing--- I am really depressed today. Work is overwhelming, and the project that I've been working on to be able to retire and not starve, that is stalled. The hair, the weight, my injured ankle, on top of a death in the family--not someone I was close to, but my husband is bearing the brunt of sorting out everything, so he is in need of support and I am just...exhausted.