How did you get your diagnosis?: Hi, for those of... - LUPUS UK

LUPUS UK

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How did you get your diagnosis?

Comeonpeeps profile image

Hi, for those of you that had no evidence of lupus in bloodwork, what was it that officially diagnosed you in the end?

Thanks.

13 Replies

I don’t have Lupus myself but the thing that finally got me rediagnosed with Sjögren’s, despite no specific blood markers, was a lip biopsy. I do have a very positive ANA though which suggested autoimmunity with high inflammatory markers, IgG and IgA and a historic diagnosis of RA.

I believe a few people do get diagnosed with seronegative Lupus on the strength of tissue or kidney biopsies. It’s pretty hard going to get a diagnosis if none of your bloods even show autoimmunity though. But bloodwork sometimes changes. Mine did.

Comeonpeeps profile image
Comeonpeeps in reply to

Hi Twitchytoes!

My skin biopsy was inconclusive which led me to tests at photobiology which has proved I am photosensitive. My only positive test has been lupus anticoagulant.

How long did it take for your bloods to change? I've been having tests for years!

in reply to Comeonpeeps

My bloods changed only when I came off steroids and was clear of all immunesuppression which I’d been prescribed for 5 years for misdiagnosed RA. They didn’t take my ANA when my RA-type symptoms first kicked off seven years ago - only my Rheumatoid Factor which was a weak positive at the time. My inflammatory markers have always been very elevated though.

in reply to Comeonpeeps

Has the Lupus anticoagulant test been re-run several times and shown positive again? If so it would be worth asking about this on the Sticky Blood / Hughes community as you might have APS -as a stand alone autoimmune condition or a relatively common secondary overlap with Lupus and Sjögren’s I’m told?

Yes, second was negative. I think it's along with lupus, considering all the symptoms I have.

Scalp biopsy when I developed a nasty sore and my hair fell out!

Comeonpeeps profile image
Comeonpeeps in reply to Cas70

Ouch Cas70. Did nothing show in your blood ever?

NO - they kept saying negative - luckily a Nurse Practitioner stepped in over the scalp lesion and there it was

For me it took about 10 years to diagnose. And for me I never suspected it even though I am a nurse (duh). I had severe leukopenia, joint pain, hair loss, unexplained fever, bouts of incapacitating anxiety, fatigue off and in for years. The doctors always said virus of some sort. In 2007 had complete work up after arthritis in my hands and feet and could hardly function. Everything was negative except low D. So I just kept on keeping on. In 2014 I developed arthritis, severe muscle weakness to the point I couldn't even lift a tea kettle, rash on face and neck. Another nurse I work with said she thought it was lupus so we ordered the testing. It came back positive ANA elevated CRP and anti RNP antibodies. I went to a rheumatologist the next week and in 2 weeks I had a diagnosis. I don't think they often diagnose Sero negative lupus here in the US. So I really feel for those of you with symptoms and no diagnosis. I kept thinking I was just a tired unmotivated person. It was a relief to get the diagnosis because You stop thinking you are crazy or imagining symptoms. My treatment is hydroxy and prednisone. It took about 8 months for the hydroxy to work, but has helped tremendously. I have to say I am never symptom free but my symptoms seem to change. Right now I am fighting frequent migraines and gut issues. The fatigue comes and goes. I hope they figure it out for you soon as I know how frustrating symptomatology can be with no diagnosis. Xo. Nan

Hi Nan, glad you've found medication that works. I've been on Hydroxy for 20 months and has helped massively too, even got rid of the migraines! So your positive blood tests took a long time to come about?

Yes, I would say 10 years from the onset of symptoms to diagnosis. I hope you don't have to wait that long! Warmest regards, Nan

Thank you Nan, you're lovely. Best wishes to you. x

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