Discolouration on bridge of nose and swollen eyes. Does the cold make your malar rash worse ?

[Penelope-Pipin]

So finally my rash seems to have calmed down although I still have it on my nose a bit it’s nowhere near as flared.

But I’ve noticed I have this weird discolouration on the bridge of my nose now, is this common after having such a bad rash ?

Also it’s getting warmer and I noticed when I was outside in the cold wind my rash seemed to get worse ?

My eyes are swollen all the time still and seem to get worse if I’m outside, they feel fatigued all the time , my left eye since the rash started has always been more swollen and gets really sore. I was in the sun on the weekend and I’ve noticed I’ve got styes again ??

I still have no diagnosis yet and I’m waiting to see the rheumatologist in September (if I’m lucky )... so I’m trying to figure out if these are common lupus symptoms or not, as my GP still suspects I could have it.

[KayHimm]

I see the rash on your nose. That is a long time to wait to see the rheumatologist. Do you know the results of the tests your GP ran?

How are you feeling? Fatigue? Joint pain?

Hard to be in limbo like this.

XK

[Penelope-Pipin in reply to KayHimm]

Hey KayHimm

So the results came back negative for lupus apparently but they did pick up my neutrophils were elevated they ran those tests again and they didn’t change much.

I’ve had a series of symptoms since September 2020

Which include :

Migraines (had an MRI nothing picked up )

Rash

Swollen and painful eyes

Styes in eyes

Bleeding gums

Mouth Ulcers

Joint pain (gotten worse I love on brufen and paracetamol at the moment morning and night) - I was painting the other day and it got to the point I couldn’t hold the paint brush anymore because my fingers seized up

Fatigue all the time just varies as to how bad on the day

And then just overall feeling of being unwell.

I have had health issues for over 7 years without any proper diagnosis for 7 years I’ve battled won’t my GI tract and they suspected I had celiac but the results came back inconclusive...

I was also diagnosed with PCOS Jan 2020 so these symptoms are all new over and above all the others

[KayHimm in reply to Penelope-Pipin]

Your GP is on top of things. It’s a crazy thing with these autoimmune diseases. Your ANA and other tests could come back strongly positive and that would put other symptoms into a different perspective. The three three things I think they could actually pinpointed pretty fast are the ulcers - they know which ones are consistent with lupus, the joint pain - noting inflammation and the rash.

Many of your symptoms people with autoimmune disease may have, myself included, but they aren’t always sure if directly related to the disease.

Sometimes ANA will become positive after several years. It sure doesn’t help those of us in limbo, I know.

Hang in there. Hope the rheumatologist appointment is sooner than you expect.

If you can get a private appointment with a dermatologist when your rash is prominent, that could help with diagnosis. Apparently, a clear cut malar rash is pretty diagnostic of lupus. It takes an expert to know if it is rosacea, lupus or something else.

XK

[Penelope-Pipin in reply to KayHimm]

I’m due to see a dermatologist as well but again with covid everything has been pushed back quite a bit so I’m just happy it’s at bay a bit, it was so bad before I don’t know how to attach a photo to show you it when it was at its worst: I’m also going to go to the optometrist in the mean time to rule out anything related to my eyes like the migraines and swelling.

Do you mind me asking if you have lupus and how long it took to get diagnosed ?

[KayHimm in reply to Penelope-Pipin]

I have undifferentiated connective tissue disease, which my other doctors refer to as mild lupus-like autoimmune disease.

It took a year and a half to diagnose- fast for these diseases, especially years ago when tests were limited. I had a false positive VDRL way before the ANA was positive. There are specials tests rheumatologists now do for those antibodies and will likely do with you.

The problem is dermatologists like to see rashes in person. Of course, they look at photos. But they can resist diagnosing - mind does- without seeing it. They like biopsies with serious diagnoses if it isn’t on the face.

Hope that is helpful

Xk

[Penelope-Pipin in reply to KayHimm]

That doesn’t really help if the rash isn’t flaring by the time I get to see them 🙈Oh man I just want a diagnosis now it’s so frustrating

[KayHimm in reply to Penelope-Pipin]

Yes, that is why it may make sense to see a dermatologist while the rash is prominent. Seems like the most a dermatologist would say is that the photo is consistent with .... . But with no tissue biopsy and seeing the rash, the dermatologist would not diagnose systemic lupus.

I am only telling you so that you don’t put too much weight on any one thing. The skin is one area. They have to figure out if you have other issues.

Your GP may have noted the characteristics of your rash. That is important too.

Do you have photos of your mouth ulcers? Did your GP see them? Those documentations are significant. People here can tell your more about lupus mouth ulcers. They are different from canker sores, which is what many of us get. Take photos of those too.

A diagnosis is important. We need to be able to understand what is happening. So do our doctors!

By the way, take record your temperature.

Xk

[Penelope-Pipin in reply to KayHimm]

Thank you so so much for all the advice ! I have been taking photos of everything

The worst my rash has been