St Thomas Lupus Trust
1,186 members120 posts

Retesting

Hi everyone!

New here! I have been struggling for years and for years I've been told Rheumatoid arthritis, fibromyalgia etc etc etc. Recently at a hospital appointment, my rheumatologist said I tested positive for Lupus/SLE. However, he isn't going to start any treatment until he tests again in 12 weeks time. Now my question is, how long did it take to be finally diagnosed and given treatment and have any of you had a symptom of sharp chest pains and heart beating so fast it's like it's about to jump out your chest? When I say this I mean it happens just with sitting reading my book or watching to. And it also feels like it's tightening quite a lot and more frequently!

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Would also love to hear about this from other people.. I have the gene, but not lupus, but was only tested once. Is it true it might have just not been flared up at the time? Me too, with fibro and rheumatic... Anxiety like there's no tomorrow, literally, lol-ish... But my doctor wasn't a believ do fibro was never actually put in my file.. Now dealing with skin problems fo over half a year, and a neck pain for over a year. Can't seem to get help with either cuz I ditched my no good doctor who only wanted to increase Effexor. 😡

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P.S. Demodex anyone?

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Sadly lupus often takes a long time to diagnose. The blood tests alone aren't definitive so the doctor will rely upon your medical history and symptoms too. Doctors tened to use 11 criteria to see if a patient may have lupus and if they have at least 4 of them it's pointing to that possibility: lupus.org/answers/entry/lup...

I was finally diagnosed after 4 years but 7/8 years isn't unusual - sadly.

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I'm not even sure if you are still on this board as I see this was posted two years ago. I hope you are doing better. I was diagnosed with partial lupus and some type of arthritis ( I was stuck on the lupus part) recently and have been prescribed hydroxychloroquine 400mg. Hopefully it works well with me. I have had the sharp chest pains as well out of nowhere and one time with the very fast heartbeat. They are less now but I think out comes when I get anxiety. It took 2 months worth of bloodwork to get my diagnosis. The first initial set of blood tests was for iron deficiency as I have been anemic for some time, abnormal cells, plasma count and a variety of other things I cant remember. I was told that all my different proteins were high but I had no abnormal cells but they did see inflammation and I was sent to an RA doctor where they ran more tests and told me about my lupus and arthritis. Hope this helps.

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