Help... Mystery: I've had rashes on and off all... - LUPUS UK

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Help... Mystery

lizd121 profile image
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I've had rashes on and off all over my body since September and then again started in the last 2 months. I get swelling (knees, hip, wrists, elbows) and they are very painful, with musculoskeletal pain and headaches.

Sometimes they appear as raised red bumps others just blotchy redness.

I get severe heat rash when in the sun and struggle with sun glare.

I saw my doctor who thought it may be an allergy but didn't know he then gave me an antihistamine which did nothing. He ran blood tests and also referred me to both a rheumatologist and a dermatologist. They now think it is an autoimmune issue such as Lupus or similar of some sort. I also saw a naturopath who told me that my immune system is struggling and could not diagnose anything either.

Any help is appreciated.

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lizd121
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Barnclown profile image
Barnclown

Hello liz...this rash looks nasty...am glad you're continuing to take pics...it sounds like you're keeping a little log of how & where the rash is affecting you. These pics & notes will be v useful to Rheumatology & dermatology when you're in clinic. Have you got dates for your appointments yet?

In the meantime, I hope you're seeing your GP about this. A GP really should examine you and document these rashes in your records...and at least give you basic treatment to help you cope until you do see your consultants. If your GP feels you need to be seen sooner in clinic, he/she can write yo your consultants. Eg several years ago, my GP believed some bad areas of rash I'd developed were vasculitic...I took pics for my rheumy before using the steroid ointment my GP prescribed. My rheumatologist agree with my GP and now I have this ointment on repeat prescription, although, luckily, my oral lupus meds seem to be preventing more of this particular type of rash from developing.

The Lupus UK website has some great info in lupus & the skin. Here is a link:

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

Take care 🍀🍀🍀🍀 coco

Tiras profile image
Tiras

🎄👣👣👣👣👣👣👣👣👣👣👣🎄

Hi Lizd121;

I too get rashes/blisters from lupus From my neck down to my feet and toes. (I can't explaine it but, it has not affected my face YET?). I now have a blister on my right foot. I can't and have had to be barefoot for 2 + years because of lupus issues on my feet. I have three kinds of creams and salves that I put on my blisters and or rashes, that my dermatologist has prescribed.

I was diagnosed about 3 1/2 years ago with lupus (SLE). So I know what you are going through. I'm a guy but, I get them in private areas also, and can't stand for clothing to rub the rashes and or blisters.

As Coco said keeping a record and photos is best. There is an app I use on my iPhone it is-----

"Myskinselfie"

You can take photos and add comments to keep track of skin issues.

Lupus is different for each of us, but, yet the same. That doesn't make sence but, then, neither does lupus!

Lupus has changed my life but, I have my motto!

👣I WILL NOT LET LUPUS CONTROL MY LIFE👣

I hope this has help you in someway?

Wishing you and your family A

🎄MERRY CHRISTMAS🎄

👣👣👣👣Tiras👣👣👣👣👣

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi lizd121 ,

Have you got any appointments through for the referral to rheumatology and dermatology yet? I hope that they are able to diagnose the cause of your rash and help to treat it. Let us know how you get on.

I would recommend taking a look at the booklet on our website which Barnclown suggested for you - lupusuk.org.uk/wp-content/u...

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