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Old 03-12-2010, 05:09 AM   #1
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Seronegative lupus

Hi, this is going to be quite long so please bear with me! I'll attempt to make it as brief as possible. I'm a 21 year old female who's been unwell for almost a year. I've had various symptoms for much longer but my level of functioning slowly got worse and by May 2009, I was in a lot of pain and I was sleeping 20 hours a day and unable to go to work. I was misdiagnosed with ME/CFS and Fibromyalgia until I requested a second opinion and struck gold with my current rheumatologist.

I was diagnosed with an undifferentiated type of inflammatory arthritis in November 2009. Scans showed inflammation in both feet, right ankle, both hands and both wrists. My rheumy said it sounds like rheumatoid arthritis because of the pattern of joints involved but the rheumatoid factor is negative, although my ESR is very high and CRP is positive. However, he said it's important not to rule out lupus because I'm showing symptoms. In a letter to my GP, he said that despite negative ANA, anti-DNA, anti-ro and lupus anticoagulant, I still could have lupus.

I thought it might be helpful to describe my symptoms as well, to see if anyone recognises any of them. I know it's important to trust your doctor and I do trust my rheumy but I'm confused and interested in other people's opinions. Obviously I have the stiff joints, swelling and pain due to the arthritis, as well as fatigue and general muscle aches and pains but I also have....a rash across my cheeks and nose....constant headaches....my rheumy wrote that I have livedo reticularis (sic?) on a letter to my GP....photosensitive rash....ulcers in nose and mouth....and I can't think of anything else that may or may not be related.

I know you can have seronegative RA (and it's quite likely that this is what I have) but can you have seronegative lupus....is there even such thing?

Thank you for reading this, I'm very grateful.

 
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Old 03-12-2010, 07:20 AM   #2
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Re: Seronegative lupus

Princess, hi. I'm sorry for your problems & frustration. I had a tough time getting Dx, which was finally "Ro-lupus", defined as negative ANA but positive anti-Ro. For years my blood results revealed nothing, possibly because timing is critical for antibodies that rise & fall with flares...? (One dr. told me best time for bloodwork, skin biopsy, etc. is when a flare is "on the rise".) Another thought: my dr. only uses a lab he knows is adept at performing autoimmune tests (they're tricky, he says).

Have you had a skin biopsy by a dermatologist or dermatopathologist*? I think a "lupus band test" is sometimes done where blood results aren't revealing. A deep punch is taken from lesional (preferably) or nonlesional skin, then examined under the microscope for tell-tale cellular changes. Second step (important!): immunofluorescent stain tests, which can light up in "bands" considered very diagnostic of lupus. (* A dermatopathologist is a dermatologist AND pathologist, meaning a dermie who does his own labwork.)

I don't know if specialists ever Dx "sero-negative systemic lupus". In skin-only lupus (discoid lupus) I think blood results are expected to be negative. But systemic? Hmmmm... But when you look at the diagnostic criteria for SLE, there's nothing that says one MUST have a minimum of one blood result of the various ones listed. That said, I'd guess most drs. would be reluctant to diagnose without at least one LAB RESULT. In your shoes, I'd consider looking for a rheumatologist affiliated with a teaching hospital, because they tend to see many patients and all the rarer variations. Hope something above helps a bit, sincerely, Vee

P.S. There's a crossover called "rhupus" that includes features of RA and lupus. I don't know how it's Dxed. Crossovers and "early cases" are probably huge challenges to doctors. HANG IN THERE! Post more when you can, OK?

 
Old 03-12-2010, 10:37 AM   #3
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princess25 HB User
Re: Seronegative lupus

Thank you for your reply. Unfortunately, it's unlikely I'll be able to see another rheumatologist. In the UK, it just doesn't work like that. I can see one privately but my health insurance policy doesn't cover long-term conditions and I can't see how it would work.

My rheumatologist did say that I may have some type of connective tissue disease. I suppose it could a mixed type? Whatever it is, he feels I am in the early stages and that it will reveal itself in blood tests one day but it's really frustrating! I've only ever had my ANA tested twice and my RF tested once. I have an appt in a few weeks and I'm going to ask if I can have regular blood tests, so at least, we can see the full picture.

I have seen a dermatologist who was absolutely useless! However, I'm entitled to a 2nd opinion and I think it's worth taking it.

Thank you again for your helpful (and speedy!) response.

 
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