It is worth pushing for a formal diagnosis?

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.

3 Replies

  • If you do have SLE then it is worth getting the diagnosis as the manifestations and treatment options will vary to those of Rheumatoid Arthritis. There are certain tests that you would receive for SLE that I'm not sure if you would for RA. Do you regularly have you kidney function tested at the moment?

    Whilst your current treatment may not differ if you were diagnosed with lupus as an overlap of RA, in the long-run it could make a difference. ANA levels can fluctuate and can also be negative in sero-negative cases (approximately 5%). Have they tested you for other lupus antibodies such as anti-DNA antibodies?

  • I had the other antibodies tested 5 years ago but nothing since except my ANA and possibly ENA but I can't quite remember.

    I have my kidney function, liver function etc tested once a month.

    My symptoms are so mild in comparison to other people's that it feels silly to seek yet another opinion.

  • It sounds like they are monitoring you well. Perhaps ask your consultant if they think it will make any difference for your long-term healthcare plan and whether they intend to reassess you at all in the future to see if the lupus progresses at all?

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