Hi, new here looking for help. seronegative lupus?

[Wr4ef]

Hi all, I am trying to find a lupus specialist in the UK. I have a malar rash, extreme sunlight sensitivity, weird rashes, joint pains, mouth ulcers etc. my GP thinks I have lupus but did some tests and they came back negative so has ruled it out. I have been reading up about seronegative lupus and am trying to find a specialist in the UK that will look at all my symptoms other than just the negative blood work. Does anyone know of any? Tia

[StriatedCaracara]

I was diagnosed with Undifferented Autoimmune Connective Tissue Disorder. UCTD. I have lupus symptoms but was negative for Anti-ds DNA and Sm and low complement when tested.

My ANA was strong and positive.

Since the 2019 SLE EULAR/ ACR Classification criteria came into being, and many rheumatologists seeming to adopt this for diagnosis, although intended only for research, I have not heard of seronegative diagnoses being made. I am not sure the 'more than four of eleven system" is still used which is confusing to patients who realise they have maybe most of the symptoms but are then not helped because blood tests are negative and maybe even ESR not raised.

Instead they talk specifically about ANA positive and negative and Anti-ds DNA positive and negative.

Maybe look on hospital websites to see if UCTD is listed. Just CTD is not sufficient as this may only cover conditions defined by recent classification criteria.

I found that emailing the department can help as then don't end up with fruitless referral.

As far as blood tests go you might be interested in this post:

healthunlocked.com/lupusuk/...

Hope things work out. Sharing above what I learnt, in case it helps.

[Largather]

Hi, I was diagnosed ANA negative lupus by Dr D'Cruz St Thomas's (Louise Coute Lupus center) in 2008. I am now with UCLH Lupus center of excellence (14 years) only became ANA positive 4 years ago. Had all the symptoms but never any positive blood work, but i was put on very low dose Hydroxychlorequine and kept it at bay till i got ill from covic jab. Prof Graham Hughes found ANA negative lupus. He's still head of the London Lupus Center (private) with a full team of lupus consultants including Dr D'Cruz. Worth a try, hope this helps.

[KayHimm in reply to Largather]

Largather,

I was ANA negative for about five years. Interesting to hear you were negative even longer. Do you mind sharing your symptoms and what other tests were abnormal? I wonder if you also have anti-cardiolipin antibodies? They used to think they can cross react and make the ANA falsely negative. Not sure where that stands now.

I wonder how many are ANA negative for a long time. I never developed full blown lupus but have progressed slowly with UCTD.

Sorry Covid caused you to flare so badly. That was the fear.

Kay

[KayHimm]

Are you sure he has ruled it out or wants to watch you and re-test? Any abnormalities like anemia, low white count? Fever?

[Wr4ef in reply to KayHimm]

Hi they ruled it out and said I don't have kidneys problems so it's not lupus?

[StriatedCaracara in reply to Wr4ef]

If they are using 2019 Classification criteria intended for research only, but seemingly used by some to diagnose also.

Link below is to the table. There are two columns and only one item in each column is scored. Score of ten, if the left and right highest scoring items together, is required.

In left hand symptom column only lupus nepritis scores 10, so if score anything else like 6, then positive blood results on right side needed.

Do you know if this is what they are referring to maybe. ncbi.nlm.nih.gov/core/lw/2....