There goes my diagnosis again - UPDATE

[leentheexplorer]

UPDATE - So I went to the doctor to show my results and he diagnosed me with mixed connective tissue disease for the time being and put me on plaquenil. He says this looks like the beginning of lupus, but my results aren't clear enough to officially say its lupus for sure, so he's putting me on those meds for prevention. He says anything could happen from now on - progression into full on lupus, remaining the same or even remission. Thanks to everyone who commented and best wishes x

Hello, I hope you're all doing well within the possibilities.

I'm a 24 year old caucasian female, completely healthy until I started developping lupus symptoms over 3 years ago (when I was 21). You know what they are, so I don't need to mention them one by one, as eventually I ended up suffering with most of them. First time I went to a rheum doctor was in 2018, she only did a few lab tests, nothing too specific, said they were fine and sent me home to take some food supplements. I did, and nothing improved (in fact over time it got worse), so I saw a different rheumathologist in October of last year. Right away from my symptoms the main thing he suspected was lupus, and I tested positive for ANA antibodies with a tier of 1/160, in which anti-histones antibodies were detected. Faced with this, he had me do even more lab tests, including all the very specific ones (anti-dsDNA, anti-Sm, anti-RNP, anti-SSA, anti-SSB, rheumathoid factor...) and all these are negative. What I did test positive for were Beta-2 Glycoprotein 1 Antibodies. My Alanine transaminase (ALT) levels are also high. I'm going to show these results to the doctor next week and I was wondering if any of you with lupus had similar test results to mine, and if there are any lab tests I might be missing and that I can ask the doctor to prescribe me, or if you know of any condition that sounds like this that I can bring up to the doctor, because I'm at a loss and I don't want to play a passive role in this, since it brings me so much physical and psychological pain. I just want to be as informed as possible.

Thank you so much if you have read this far and if you leave a reply. Also please excuse any typos since English isn't my native language.

Wishing you a lovely day,

leentheexplorer

[Tinythepanda]

Hi,

I have APS (antiphospholipid syndrome) which is another autoimmune condition. Beta-2 Glycoprotein Is one of the tests they use to diagnose this.

I’m not suggesting this is what you may have but it may be worth requesting the other APS blood tests too.

[leentheexplorer in reply to Tinythepanda]

Thank you for your input!

[baba]

Just a thought, was the test for Beta-2 Glycoprotein 1 Antibodies repeated? As sometimes can be a false positive, it is usually repeated in about 12 weeks.

It’s indicative of Antiphospholopid/APS/Hughes syndrome. More information in the following links

ghicworld.org/

healthunlocked.com/hughes-s...

[leentheexplorer in reply to baba]

It hasn't been repeated, at least for now. The weirdest thing is my ANA first came out positive and then on the second test it was negative. Thanks for replying!

[Kim_21]

I am in my 30s living with lupus for almost 7 years, doing blood test quite frequently every 2 weeks or once a month. I really admire u that u learnt those things, for me I didn’t even know what are those things... I’m scared to know because the more I get to understand the more concerns and stress...Lupus is a such nasty disease, it totally ruins ur look, falling hair, dark skin...it takes out all my confidence to go out. Currently, I’m seeing 4 different specialists, rheumatologist, renal, dermatologist, ophthalmologist, haematologist..anyway, if it’s lupus, u need to take it seriously and treat urgently. Good luck!

[Chanpreet_Walia LUPUS UK]

Hi leentheexplorer,

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

I'm glad to read your second rheumatologist took a different approach and examined your symptoms and sent you for tests.

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. Learn about the specific tests and criteria needed for a lupus diagnosis at lupusuk.org.uk/getting-diag...

We published a range of factsheets and booklets on topics relating to lupus such as the skin and hair, you can read these publications at lupusuk.org.uk/publications/

Please keep us updated.

Best wishes,

Chanpreet

[Tiggywoos in reply to Chanpreet_Walia]

Thank you for posting ChanpreetCould I just ask if there is any information regarding ANA results ? Do they have to be positive to confirm an Autoimmune disorder ?

Thank you 😊

[leentheexplorer in reply to Tiggywoos]

Not necessarily, from what I've read. Mine first came out positive, then negative.

[Chanpreet_Walia LUPUS UK in reply to Tiggywoos]

Hi Tiggywoos,

No, not necessarily. Sometimes, due to low disease activity and/or treatment a person who previously tested 'positive' for an ANA test may then go on to test 'negative'.

Around 5% of people with lupus, an autoimmune disorder, will have a 'negative' ANA test result.

Best wishes,

Chanpreet

[Tiggywoos in reply to Chanpreet_Walia]

Thank you that’s very kind 😊

[leentheexplorer in reply to Chanpreet_Walia]

Thank you so much for all your information!