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St Thomas Lupus Trust
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Help needed :(

Hey everyone- sorry if this seems like a long post. The past few years I have not been feeling well- fatigue, joint pains, couple of miscarriages etc. however on my last miscarriage (last oct) I haven't been myself- pains in joints, flu like symptoms, really bad fatigue, rashes, patches in my mouth. Doctors ran bloods all normal apart from my esr and crp which has always come back raised. All my antibody tests are negative and rheumatologist thinks it's CFS (sigh) which I know it's not! I'm at my wits end, is it possible I may have lupus but nothing is showing up yet?

Any help would be much appreciated


3 Replies

Hi. I hope things get better for you. Just to say that when my symptoms started I had negative blood tests but when I got very ill, the tests for antibodies then came out positive. Can your GP refer for a second opinion? Good luck x


Hi Andfiona, thank you for your reply :) I'm going to see another rheumatologist next week so I'm really hoping he doesn't say the same thing :/ xx



I'm so sorry to hear about your miscarriage. The fact you felt unwell after that could well be lupus flaring. It's triggered by hormonal activity and lots of ladies say they get flares before periods and in pregnency/when breast feeding etc due to the surge of hormones.

It's extremely common for lupus blood tests to come back false negative (about 10% do) which is why lupus specilaists don't rely upon them alone and take into account a persons history as well.

Good luck with the new rheumatologist hopefully they will look closely into your history and not rely upon blood test results alone.


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