Test results - borderline lupus?

[achydunlin]

After a wait of over 2 months since I saw a rheumy and hearing nothing, I made an appointment to see my GP to see if she'd heard anything. Yes, all test results back, but very odd - a lot of borderline ones. She said I had "could have Lupus", it looks like it, but also some connective tissue disorder (which I understand is a catch-all) and possibly inflammatory arthritis - my rheumatoid factor was also borderline... I've always felt I've had lupus for many years (three consultants - a dermatologist, an A&E and an immunologist all mentioned the possibility some 20 years ago). So I didn't look surprised. I'm confused by the 'borderline' thing though.

She said the rheumy would be in touch no doubt and sent me on my way with more meloxicam and gabapentin (which are keeping my joint pain and aches at bay).

Thanks for listening x

[misty14]

Hi Smellydunlin

It looks like you will have to be kept under Rheumy Review with borderline results. Tough after 20 years, bet you want a more definitive diagnosis!. Did the Rheumy say when he would see you again?. Make sure you chase that appointment!. I can relate as I've been ill for 28 years and diagnosis is Undifferentiated Connective Tissue disease, a mix of three possible illnesses when I'd always thought it would just be Lupus!. Take CareX

[achydunlin in reply to misty14]

Not heard from rheumy, this was the GP - who looked baffled by the whole thing (I understand most GPs don't really understand autoimmune disease - my Mum has Crohns disease and should really be monitored but yet only has blood tests once a year and they send her on her way with her meds). The rheumy at my first appointment had said connective tissue disease in my notes... I have a friend who has been ill for over 15 years all with negative blood tests, it's only in the last year that something has started to show with ANA tests and still she gets diagnosed with UCTD.

Thank you for your advice. Good luck with your diagnosis - I'm just realising what a nightmare it all is.

[dawnaj]

I was just tested for lupus, they found out that I had a rare blood disorder, called Antiphosolipid syndrome. Maybe this might answer some of you questions. It is an auto immune disorder. It is also called Hughes syndrome or ASP, sticky blood syndrome. 

[Paul_Howard Partner LUPUS UK in reply to dawnaj]

Hi dawnaj,

Antiphospholipid syndrome does often occur as an overlapping condition in lupus or it can also be a separate condition. If you need any more information about it I recommend you take a look at the Hughes Syndrome Foundation website at hughes-syndrome.org/ 

They also have their own community here on HealthUnlocked at healthunlocked.com/hughes-s...