Could this be lupus or is it something else? - LUPUS UK

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Could this be lupus or is it something else?

Harpssss profile image
2 Replies

I've been back and forth to the doctor's since 2019 regarding a potential auto-immune condition, but up to now, there has been no conclusion. This morning I had a telephone appointment with a rheumatologist who has said for me to come in for a face to face tomorrow morning. So, before my appointment, I just wanted to ask for some advice here.

After an appointment with my GP regarding my ongoing symptoms, the doctor ran some bloods. I was then referred to a rheumatologist when my bloods came back with indications I had an underactive thyroid and a borderline positive ANA. However, when I spoke to the rheumatologist this morning, she seemed dismissive of my ANA results and said a borderline result means that I am neither negative nor positive as it was my HEp-2 Cytoplasmic Pattern that was borderline. This left me a bit confused, so I was wondering if anyone on here could explain what this all means and whether a borderline result would be indicative of Lupus or another autoimmune condition?

Just for some further background, my symptoms include:

Extreme fatigue, joint paint and some swelling, chest pain, Raynaud's, erythromelalgia, what looks like livedo reticularis, photosensitive skin rashes, recurrent petechiae rashes, rashes over my eyes and cheeks (slightly pink but nothing extreme), skin/lip dryness, recurrent mouth ulcers, dizziness and postural issues (being investigated for POTS), headaches, previous issues with alopecia, gastro pain/bloating/queasiness.

If someone could shed some light on these results I'd be really grateful.

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Harpssss
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2 Replies
Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Harpssss,

Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack that you can download or request at lupusuk.org.uk/request-info....

Good luck with your appointment tomorrow. Before you attend, you may like to read our article on 'getting the most from your medical appointments' at lupusuk.org.uk/getting-the-....

A positive ANA test result only confirms you have an autoimmune disorder, it is not sufficient in diagnosing lupus (5% of people with lupus will test negative for an ANA test).

dsDNA antibodies are very specific in people with lupus, as they are not typically seen in any other condition or in healthy population, however only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. To learn about the specific tests and criteria needed to make a diagnosis of lupus visit lupusuk.org.uk/getting-diag...

Extreme fatigue, Raynauds, joint aches/pains, skin involvement and oral/nasal ulcers are all symptoms associated with lupus. Below are information links that I hope you will find helpful:

Pain management - lupusuk.org.uk/pain-managem...

Managing fatigue - lupusuk.org.uk/managing-fat...

Ulcers - lupusuk.org.uk/coping-with-...

Skin - lupusuk.org.uk/wp-content/u...

Hair loss - lupusuk.org.uk/coping-with-...

Best wishes,

Chanpreet

panther50 profile image
panther50

Bit late for my reply, but borderline ANA doesn’t really give an indication either way. Most people with Lupus have positive ANAs, but you’ll see on here some people don’t (rare but possible). There’s been a recent school of thought by some rheumatologists that if it’s negative you can’t have lupus (most of us here don’t agree). However if it’s positive (even weakly) that, with other symptoms is enough usually for them to do further tests to explore a lupus diagnosis. ANA has different results when positive I think speckled can be lupus, other patterns indicate other auto immune conditions.

Hope this explains a bit. It’s really just part of the puzzle. How did it go? Did you get some answers?

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