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Lupus diagnosis - how did you get diagnosed and what were your symptoms please

Loopyluw12 profile image
4 Replies

I've had all the following and more but can't remember all my symptoms, and some overlap with my other issues -

I've had skin rashes all over my chest and back (not itchy) that have turned discoid in shape then scaley and eventually dissappear but then more appear in different spots on my torso. I have night sweats, hip and back pain, absolutely exhaustion, mouth ulcers, depression and big horizontal ridges in my nails on my hands, my toe nails are all really thick and disgusting, I'm having bad dizzy spells and random swollen lymph nodes (although we are not sure yet under investigation by my gp) when ever I get a fly bite or anything it gets seriously infected and I'm extremely forgetful and foggy headed.

I have an under active thyroid (auto immune) which is well under control and I've got crohns disease which is currently in remission (than God!)

My question is dose this sound like lupus? my gp did more bloods to check for lupus last week as apparently they have done a few last time I had this rash and these symptoms, but they didn't do all of the tests as the found out that I had crohns so blamed it all on that.

Any help would be very much appreciated

Thanks

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Loopyluw12 profile image
Loopyluw12

Anyone? 😥

Ck09 profile image
Ck09

Newly joined so not an expert! My symptoms were sun rash/sensitivity + hair loss which led to bloods tests which were ANA mildly positive which led to skin/head biopsy which confirmed cutaneous lupus. Saw a rheumatologist who said probably systemic lupus but then said it was lupus-like. It's all still a bit vague. I have aches and pains and tiredness but wasn't putting them down to anything really. I'm still not sure so I can understand how you must feel! Best of luck.

Loopyluw12 profile image
Loopyluw12 in reply toCk09

Thank you, that's really helpful. The symptoms are so non specific that no one's taking me seriously despite having two diagnosed other autoimmune issues.

One of the tests they did came back mildly raised so I have been asked to go back to get my bloods retested in 12 weeks which will be mid June.

So fingers crossed something is done... The rash has settled down and only seems to flare up when I'm really stressed and ill. But the join pains come and go constantly and move round when they feel like it

The doctors are now putting it down to anxiety and depression which is hugely irritating but I understand how they may perceive the situation.

I hope you are OK. Have you been put on any meds since being diagnosed. .

Thanks

Loopy

Ck09 profile image
Ck09 in reply toLoopyluw12

Yes, on Plaquenil. I seem to have a little more energy but not a huge improvement in the joint aches and pains. No sun rash but no sun either. Factor 50 and shade... Sorry that your symptoms aren't being taken seriously enough 😟

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