Rash

[Tinacros]

Does this look like a lupus rash. I’ve had these sorts of flare ups for years now. Suffer with dry eyes, joint pain fatigue etc. dermatologist didn’t know what it was. That was five years ago. I’m still here suffering. With covid not been able to see GP but even when I could I just got given hydrocortisone and told to use sparingly. This pic is today. My optician has referred me to ophthalmologist and said they are better at helping with diagnosis. She thinks it’s lupus or sjorgrens x

[Clairedown]

I am sorry that you have this uncomfortable looking rash. I am also sorry that I have no idea whether it is caused by lupus. What I do know is that lupus can cause all sorts of strange rashes to come and go on my skin. Some last hours and some months. Some itch, some are sore, some burn and some just look bad. I sympathise with you and I do hope you find some resolution. Claire

[Tinacros in reply to Clairedown]

Thankyou. I’ve just spoke to a lovely GP who is willing to help me xx

[Chanpreet_Walia LUPUS UK]

Hi Tinacros,

Welcome to the LUPUS UK HealthUnlocked community, we offer a free information pack which you can download or request at lupusuk.org.uk/request-info....

I'm glad to read that your optician has referred you to an ophthalmologist, I hope your appointment with them will provide some answers.

I would also suggest getting a referral to a dermatologist as it has been five years since you've last seen one. They may be able to do a skin biopsy to determine the cause of your skin rash.

A typical malar (butterfly) rash is usually a pink or reddish-coloured rash which mainly occurs on the cheeks and the bridge of the nose. According to The Lupus Encyclopaedia, the rash of acute cutaneous lupus which includes the ‘malar rash’ (butterfly rash) can “last a few hours, a few weeks or sometimes longer”. A malar rash is generally not permanent; it often appears when disease activity is higher or when exposed to certain triggers such as UV light. To find out how rashes can be treated, you can read our booklet on lupus and the skin here: lupusuk.org.uk/wp-content/u...

We have published a range of factsheets and booklets on lupus and certain topics which you can read at lupusuk.org.uk/publications/.

Best wishes,

Chanpreet

[rosebud52]

I have both Sjogrens and Lupus, i have had Sjogrens for many years and never had a rash, but last year I started off with a small rash which got bigger and painful and wasn't diagnosed until I became really ill and taken in to hospital, which after many tests was diagnosed with Lupus, so I would think it more likely to be Lupus, I hope this helps and I really hope you get a diagnosis because then you'll know at least what your dealing with and maybe put on the right medications, I also suffer with dry eyes.

[Tinacros in reply to rosebud52]

Thankyou. I’ve just booked some blood tests on request of the GP. I think for sjorgrens x

[rosebud52]

Your sure to get an answer as to whether it sjogrens or lupus, good luck I hope all goes well for you x

[Jumper99]

There are several things that could cause a rash around your eyes. I’m assuming you have checked for allergies to eye products. It could be eczema but equally other things too and eczema wouldn’t explain joint pain, but then they might not be related. It’s so tricky with our symptoms, they can fit into many different areas. I’m so pleased to see that the doctor is being helpful, but I agree with the lady who thinks you also need a referral to a dermatologist. I hope you get some answers quickly xx

[Tinacros in reply to Jumper99]

I’ve seen a dermatologist and was allergy tested for 240 products. All came back negative. This has been going on for seven years now. I’ve used ever lotion potion in the book. It’s not blepharitis either as my optician checked my eyes. She did the litmus test and my eyes are extremely dry (which has been going on for years too). The optician mentioned sjorgrens or lupus. I’ll just have to wait and see. I’m at the end of my tether with feeling so rough 😟

[Jumper99 in reply to Tinacros]

I did similar to you, I have a face rash rather than eyes. Some of it is probably lupus but I think roseacea too and maybe eczema. I went to a dermatologist years and years ago but no allergies turned up. Which is interesting as I have since had a skin prick test in a hospital by a doctor showing a dairy allergy and a very slight feather allergy. I ended up not washing my face at all apart from when I washed my hair and that helped a bit. No makeup. I can use some micellar water now. yDisappointing, isn’t it? When you know something is wrong but they can’t find it. Frustrating too. I have myself found out that tomatoes are part of the cause of my rash. But I’m trying to persuade my GP surgery to send me to a dermatologist again now. Sometimes my whole face has sore itchy patches.I was diagnosed with Sjogrens because my eyes are very dry. I had blepharitis but not a rash round the eyes like you. It looks very uncomfortable.

Good luck in sorting it out x

[Tinacros in reply to Jumper99]

Thanks. I’m keeping my fingers crossed. I’ve got a phone spot in January. It’s only a triage one though. Part of me just wants to bite the bullet and go private. But obviously it’s the cost 😕 x

[Mrsgem]

Hi Tinacros

I’ve been diagnosed with SLE this year and recently have been battling rashes around my eyes that look very similar! They are sore and itchy and burning. Last time all around my eyes were swollen and it looked like I’d been in a fight 🙈

Whilst I’ve had eczema on other parts of my body previously, this rash felt quite different. After a consult with my rheumy and a dermatologist The original itchy rashes were confirmed likely due to photosensitivity of lupus (ive never experienced photo sensitivity before) and the dermatologist gave me topical creams to help.

I saw a rheumy with the latest swelling incident who put me on a 3week course of prednisone to calm it down (which worked quickly but still struggling with a few side effects even with gentle tapering off them). Again it was believed to be sun induced (I live in Middle East so suns hard to avoid).

I get butterfly flushes when I am ill or really run down but they tend to be quite transient only lasting a few hours, where’s the eye rash can last days-weeks.

I can’t say if the lupus is causing your rash but I it thought it might be nice for you to know there’s someone else who gets a similar issue!!

Gem 💜

[Tinacros in reply to Mrsgem]

Thankyou so much for replying. You eye problems sound similar to mine. It burns so bad. I’m in the uk so sun isn’t a problem though 🥴I’m hoping someone gets to the bottom of it for me. I’ve kept lots of photos this time to take with me to the specialist x

[Cruising2020]

Hello to you. I was looking at a mirror image of myself when I looked at your photo. For years I kept getting this rash, only around my eyes. I visited GP, Ophthalmologist and Dermatologist. No one could actually identify what is was or even say that they had seen other patients with similar. It wasn’t like my normal Lupus rash, which I got on other areas of my face and body. It felt as though my top eyelid and brow was a brick and was so very sore. I expect you can identify with that same feeling. It always left the skin very taunt. Like you, the only thing that worked was a hydrocortisone ointment. It never coincided with a flare up, which I was told that it should of done! I never got a reason why it appeared - thankfully though - it hasn’t reappeared for approx a year (I’m crossing fingers, knees and toes!). It was ‘just one of those things’!

I hope you get an answer soon and get relief from it.

Too much of a coincidence that all your other symptoms are related to Lupus.

Best of luck x

[Tinacros in reply to Cruising2020]

Thankyou. Unfortunately this has been happening to me for going on 7 years. I’m not sure what it is but this time I’m determined not to be fobbed off. It’s affecting my life so much and feel it’s aged me so much xx

[Cruising2020]

I can totally understand and relate to what you’re saying and feeling. It took from the birth of my daughter in 1978 to 1999 for a formal diagnosis and that was even after a report from a Dermatologist 10 years prior, had been missed. When I started getting that particular rash, (different to the one I saw the Dermatologist about) I didn’t want to go out or see anybody. I felt so ugly and hideous. I do hope you get an answer soon.Best wishes xxx

[Tinacros in reply to Cruising2020]

I think I’m going to stand my ground this time tbh... it’s painful too xx

[pauly10044]

Ask your Dr. about this...mayoclinic.org/diseases-con...

[Tinacros]

Thanks I will do x

[Cruising2020]

Good for you - I wish you well xx

[Koala06]

Hello, my sister had the same symptoms has you - with more rashes.. - and she was diagnosed sjogrens and fybromialgia. Sometimes rashes can also come from vascularitis... Courage...

[angus50]

Hi, I have exactly the same rash and I have lupus and Sjogren's. Hope that helps but you do need to pursue it with your GP get a referral to a rheumatologist asap. all the best😀

[Tinacros in reply to angus50]

Thank you. X

[Jmiller623]

Hi Tinacros. Sorry you’re dealing with this. Rash around the eyes like that would make me more suspicious of polymyositis/dermatomyositis.

Do you get bad muscle aches esp in the hips or rashes on your chest?

Lupus rash typically spare the eyes. A dermatologist should be able to help diagnose.

Sending you well wishes and hugs ❤️xx

[Tinacros in reply to Jmiller623]

I get joint pain but not in my hips. I don’t really get rashes anywhere else either. I’ve got ophthalmologist appt in January and waiting for rheumatologist appt too xx