What exactly is needed for a Lupus diagnosis?

[AFrances]

Looking for some advice from people who have been diagnosed with Lupus…

In July I went to my GP due to severe joint pain, along with other symptoms. Pain started in my wrists but has moved to my other joints now and is making day to day very difficult. The GP took some bloods, but was so sure it was RA that he referred me straight away to rheumatology.

Anyways, bloods came back negative for RA, but positive for pretty much all antibodies associated with Lupus.

I presumed it would be a pretty straight forward diagnosis of Lupus and treatment plan established due to these results, but my rheumatologist is for some reason delaying a diagnosis (which means waiting longer before I receive suitable medication) and wants to first do some x-rays and further blood tests.

Notable blood test results so far:

ENA antibody - POSITIVE

dsDNA binding antibody - 258

Connective tissue antibody screen: POSITIVE

ANA screen: POSITIVE

Ro antibody: POSITIVE

Anti Ro 60: POSITIVE

Full Blood Count: Low

Ferritin: High/238

ESR: High/38

Symptoms:

-Severe joint pain and swelling (wrists, fingers, elbows, knees, feet)

-numbness and tingling in fingers

-hair loss/scalp itchiness

-red blotches on cheeks

-fatigue

-swollen glands in throat

-sores in nose/mouth that don’t heal for weeks

-urgency to urinate on more frequent basis

-short term memory loss

-nausea

-tightness in chest

It seems that many people have received a Lupus diagnosis without the extensive blood tests and symptoms I’ve had, yet my rheumatologist won’t provide a diagnosis despite the smoking gun evidence I’ve provided.

My question is, surely the blood test results and symptoms are enough to provide a diagnosis? Should I look for a new rheumatologist or is this standard?

Any advice would be much appreciated…

[whisperit]

Hello AFrancis

Well, it does sound highly suspicious to me. But it isn't unusual for diuagnostic labels to be delayed or changed in the earlier stages as the pattern of illness resolves. What's more important is getting started on effective treatment. Now you are int he care of a specialist, your GP is highly unlikely to be willing to prescribe without direction from your rheumy.

So that's the thing I'd suggest you need to chase - check if your GP hasn't already recieved an assessment letter from your rheumy and if they have, get a copy. Then chase that rheumy over what the management plan is. If you aren't happy, you should definitely seek another opinion.

IN case you haven't enough info, there are lots of LUK leaflets here lupusuk.org.uk/publications/

And even more technical guidance here

academic.oup.com/rheumatolo...

Good luck x

[Bebe76]

Your rheumatologist may be doing more tests to rule out other autoimmune diseases, as symptoms often overlap. It is also not uncommon to have more than one autoimmune disease. For example I have SLE, Sjogren's and Coeliac disease.

[Sarahmac8312]

I am going to my neurologist on Thursday 14/10 to see if my migraines are a result of Lupus my tiredness is so serve. the medication they gave me for it caused more problems