Not yet diagnosed, seeking advice: Hello everyone... - LUPUS UK

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Not yet diagnosed, seeking advice

caledoniaj profile image
10 Replies

Hello everyone! I was just wondering if this looks like a malar rash? I have not been diagnosed with lupus yet. I noticed that when I am more tired I get red on my cheeks, nose, and on this day even my chin. My skin feels sensitive and feels a little more rough where the red spots are at. My blood work has come back with a negative ANA by EIA reflexive, but the quite a few tests are either high or elevated that have to do with inflammation. Years ago I had swelling in my right hip and I was in a lot of pain. The ER doctor thought that I might have lupus, but when I went to my primary care doctor, the tests came back negative and the ended up saying maybe I had bursitis. Now, four years later, I was sitting in the sun and got a very dark red spiderweb looking rash across my leg and it burned. Then the next day I woke up with my right side of my mouth slightly droopy and numb. Now my whole right side of my body is droopy (mouth, shoulder, butt) as well as numbness, swelling, and red spots that come and go that feel itchy and burn. My muscles are weak, I am fatigued, and I have a sore throat/ nauseated quite often. Most days my skin feels sensitive. My throat is also dry and hoarse, eyes feels dry at times. I have had many doctors tell me they think it is autoimmune related, specifically lupus, but the blood isn't showing anything and they say some symptoms overlap so they don't know. Are these common symptoms with lupus? Any suggestions would be greatly appreciated. Thank you!

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caledoniaj
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10 Replies
Aralyn profile image
Aralyn

It looks like it may be across your upper lip as well in the picture. Do you find it is red there also?

caledoniaj profile image
caledoniaj in reply to Aralyn

I've noticed that I tend to get red right under my nostrils and slightly on my forehead above my eyebrows as well.

Puska profile image
Puska

Often what we think is Malar rash is not considered by the specialists to be one so they seem to be the best ones to advise. It's possible that the facial symptoms are Bell's palsy and which occur with inflammation. Best get it checked.

caledoniaj profile image
caledoniaj in reply to Puska

The doctors seemed to have ruled out bell's palsy because it is not just restricted to my face. From there they are thinking some sort of autoimmune disease, with lupus being the main thought.

Wildcats85 profile image
Wildcats85

So, I had that same rash, but not on my chin, when I had a bad flare up about a year ago. I was so tired and my skin all over would get weird rashes on it. I work in surgery so the end of the year in the states gets very busy. Lots of stress at work and personal life. My rheumy wouldn't listen to me. ANA test can be false neg. You just have to be persistent and maybe try other drs. Listen to your body though when it is telling you it tired.

caledoniaj profile image
caledoniaj in reply to Wildcats85

Thank you for your advice!

It never malar rash

But all symptoms goes with autoimmune disease

Sjogrens syndrome very fit fir diagnosis you need antiRO and antiLaa test

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi caledoniaj ,

Welcome to the LUPUS UK community forum. I'm afraid that we are not medically trained here and so cannot comment on the photo of your rash or say whether you may have lupus or not.

Have you been to see a rheumatologist to be investigated for autoimmune diseases? You have described a number of symptoms which could occur in lupus or Sjogrens syndrome, although these may not be the only possible causes.

If you would like more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

grannyjogger profile image
grannyjogger

Hi, I have what I was convinced was a malar rash - very distinct butterfly shape across cheeks and nose and redness on the chin as well. Eventually got an appointment with dermatology. I didn't have a flare up at the time but had taken photographs with me which showed the rash clearly. The doctor immediately discounted malar rash and said it was rosacea - he said the redness on the chin is typical of rosacea. Still waiting for a flare up that is severe enough to get a punch biopsy. I would talk to your doctor or rheumatologist about it. As Paul said, we're not qualified medically but can just share our own experiences.

SweetoneOdie profile image
SweetoneOdie

Any advice on Dr Paul Emery? I was referred to see him . I am In Florida but willing to travel ..

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