Well, I finally have a diagnosis. Subacute Cutaneous Lupus. I do have some systemic involvement but dont quite meet the criteria for Systemic (3 of the criterias). I am just relieved to have someone give me a diagnosis. I have seen so many post were people are just not getting the help or answers they need.
I was put on plaquenil and have had no side effects which is great.
I have learned so much over the last few months about my disease and it has been a big help to have this forum. I plan to be very active on here.
Thanks for your support.
This is how I got diagnosed:
ANA positive 1:160 speckled.
positive biopsy for rash consistant with lupus
Also have livedo reticularis and possibly Raynaud's
Also tested positive for smooth muscle antibody but my Rheumy is not concerned.
I do have a question for you. One of my blood test for an anticoagulant (anti beta 2 glycoprotein ab) came back negative at 4. According to the lab under 10 would be a negative. I read in "The Lupus Book" that this can go up and down in a flare. I am not in a flare, in fact, my last ANA was negative and I know this can happen. My question is would this anticoagulant have been positive in a flare?? Do normal people have these anticoagulant antibody's present in small doses?? If this would be present at a later date that would make me a candidate for Systemic. As I would then meet 4 criterias.
I was not familiar w/ the anticoagulant anti beta 2 glycoprotein ab, so I looked it up. What I read was it can be present in lupus as well as other illnesses, but I think with all the other symptoms in consideration it would increase your chances of a lupus dx if it were present.
In the Lupus Book, the dr. mentions smooth muscle antibody only once and says that about 30 - 60% of those w/ autoimmune hepatitis also have antibodies to smooth muscle or mitochondria. (This doesn't mean you have autoimmune hepatitis, you will just want to be aware of the connection.)
Your ANA level does not go up and down according to a flare. I felt bad when my ANA was negative and pretty well when it was 2,560. Your symptoms dictate whether you are in a flare or not.
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