Hello. I've been lurking for a while, unsure if I had much to offer as I have a non-official 'suggested' diagnosis of SLE.
I was diagnosed with an unspecified inflammatory arthritis in 2009 and then re-diagnosed with Rheumatoid Arthritis and Secondary Sjogren's Syndrome in 2011. The first rheum I saw felt very strongly that I have an RA/SLE overlap but my current one was less convinced, so I just got on with things. However, I saw my rheum recently and she suggested that it was likely I had a mild presentation of SLE but given that I am already being treated aggressively for my severe RA, a formal diagnosis of Lupus will not make much difference. I agreed and went merrily on my way.
To be honest, I've always felt unsure about pushing for a Lupus dx because I'm not convinced I have it, given negative antibody tests. However, I wonder if I would be positive for ANA etc if I was tested at my worst. I have only had blood tests twice - once at initial dx and once again when I changed hospitals to meet my current rheum and I have certainly gone rapidly downhill since then.
Is there any benefit or advantage to having SLE formally diagnosed and recognised? My family think I should use my private health insurance for another opinion but I'm tired of hospitals, blood tests and being poked and prodded by strangers.
Any thoughts would be gratefully received. Thank you.