I was wondering what your opinion of this rash is? Does it look like a lupus rash? I’m in the MCTD and I’m on methotrexate and hydroxychloroquine. I get these rashes in a variety of different ways, always driven by sun, heat, stress or medications.
Are there any other autoimmune disorders that cause facial rashes? I’ve found reading the posts on here more helpful than my Rheumatologists/Google so just wanted your opinion.
They haven’t diagnosed Lupus I must not meet the criteria yet, but I just want to understand what I’m living with.
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Tonkie
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I think dermatomyositis can cause what's called a heliotrope rash, which covers the eyelids and looks a little bit like yours. I only know because I was doing all kinds of research into my symptoms and remembered that coming up. I don't know if that type of rash is associated with anythiing else and not sure if the malar rash is always across tjr nose or ever involves the eyelids, as everyone's experience is different.
Hi, thanks for the reply. I get lots of different rashes across my face, neck and hands but this is the one that bothers me the most as it burns. They won’t even entertain a dermatology referral so I feel pretty hopeless with it all now. The allergist wouldn’t even see me when my eyes have been swelling closed for 7 years. I don’t think I’ll ever get to the bottom of it. Most days I just look flushed. But when I’ve had angiodeoma (which can be triggered by sun exposure) I end up like the picture above and it feels like I’ve had acid thrown at me. All my skin peels afterwards. My eyes have aged so much with all the swelling and all the steroid creams they’ve given me over the years. Thankfully it hasn’t been too bad recently but then one eye swelled closed last week even though I’m on 3 antihistamines quadruple the conventional dose, then I got hives all over my face and back.. then I ended up with sinusitis and had to stop methotrexate. Just really tired of managing conditions especially when I don’t even know what’s causing the symptoms. I would pay privately but I don’t even know who I should go and see about any of it, there’s just so many symptoms I’ve been ignoring and just treating acute issues like swelling as doctors are reluctant to do any referral for anything. I always put Everything down to eczema/osteoarthritis, I feel so stupid now for being so ignorant. Im just getting down. I can’t use any make up or skincare product, I flare up randomly even with all these antihistamines.. just a bit fed up of looking like an ogre.. especially when it always happens on a family event.. stress is a huge trigger. I wanted a cute Mother’s Day picture but my eye was all swollen closed 😔Maybe I’ll ask my new Rheumatologist if they can refer to dermatology? Do you know if they can do that? If I paid privately for dermatology would they be able to do anything if my symptoms aren’t too bad right now? Since the hydroxychloroquine/methotrexate started I’ve only had a few flare ups on hands/face, it’s really helped with the skin stuff better than the antihistamines have. Thanks again for your advice I’ll look at dermamyotosis in the meantime and sorry for all the questions I’ve got no one to ask really.
Hi Tonkie. I know you are aware we can’t diagnose you but I do have an idea. If you have indeed been prescribed steroid creams for your skin and have used it awhile it is possible to have steroid induced rosacea. It burns and peels your skin. If this is so, you need a very good dermatologist and not one to advise steroid creams on face. That is antiquated advice. Or, it’s possible you have rosacea. That too needs a good dermatologist. I too have rosacea. It is common to have it with lupus and hard to distinguish malar rash induced by lupus or rosacea. One thing you can do right now to see if your skin settles is to only eat 30-40 grams of carbs a day for 2 weeks. It is very hard but it can be done. You will eat chicken, vegetables, eggs, rice, fish, broth and add up your tiny amount of carbs. Drink a lot of water. No sugar not one bite. If you follow this regime for 2 weeks and notice a huge difference ( some people go back to pale) it may just be rosacea. If it is steroid induced rosacea I’m not sure how much relief you will find. Suck ice constantly. Sleep in cool room. I’ve been through it. You may be able to tell. Good luck. Meanwhile this does not in any way mean you do not have lupus or another AI disease. But it is a good way to eliminate rosacea. Last. Put nothing on your skin. No makeup no cream. Nothing. Wash only with distilled water. If you can’t get that cool water gently pressed on skin with soft cloth. You have lovely skin.
hi thankyou for your advice that’s really helpful. I stopped with the steroids on my face around 2 years ago as they were thinning the skin even more. The only thing I could use is Balmonds and I’ve found that quite soothing. But it has given me angiodeoma twice now so can’t use that anymore. I’m allergic to Vaseline, e45, aveeno.. all the things the doctors suggest. It’s interesting you mentioned carbs - I have an awful reaction in my stomach to them and can’t eat a lot otherwise I suffer with awful bloating. The sugar may be an issue but I could give it a go for 2 weeks and see if there’s any difference in my skin. I don’t use make up and only wash with a damp cloth. It’s getting sunny here now and my skin burns and my eyes swell closed then I get all these weird rashes afterwards that won’t go for weeks. I’ll definitely try your suggestions above now we are in spring - I tend to start suffering as soon as the sun comes out. The hives started last week and one eye swelled shut after our first sunny day! I really appreciate any advice as the doctors haven’t been very helpful when it comes to my skin, so your tried and tested advice is invaluable! Toni x
Re your comment about creams, I can’t use a lot of common creams but the green people fragrance free natural moisturisers are good and when I was a kid I also used goat milk cream which worked well! The green people do a good eye cream that soothed my eczema on my eyes. Basically stick to natural products and avoid chemicals including in things like shampoo! If you’re sun sensitive, you need factor 50 and a vit d supplement all year round indoors and outdoors. Hope that helps!
I have facial rashes and am currently on Prednisolone and MMF. However, Rheumatology would not deal with the facial rashes until I'd had a biopsy done by Dermatology. GP referred me to Dermatology. The results showed autoantibodies in the skin biopsy. Dermatomyositis can be diagnosed straight from a skin biopsy, mine did not show DM. I'm also in the CTD group now, waiting to see if it progresses into something with a name to it. Once the biopsy results came through, I was seen very quickly by Rheumatology who put me straight onto MMF. There are other issues as well , which I won't go into here. But I just wanted to say that maybe speak to GP about a referral to Dermatology for a skin biopsy.
Hi again. It is extremely important that you wear very dark sunglasses and a hat and wear clothing with a sun factor of 50 or more. If you can not do that wear long sleeves. The hat needs to be wide brim. In your home, wear sunglasses as well. You may get relief with your eyes.
The rosacea protocol that I offered in my post is not mine. It was designed by a man named Brady Burrows on a now rather defunct rosacea forum. He helped thousands of people. David Pascoe in the UK I believe still has his newsy forum. But the protocol for eliminating other problems going on skin or body is the one above. Right now do not worry about how you may look, your eyes, etc. Only you really see it. If you do follow the protocol it is important for 2 weeks to use no creams. Just cool water. If your skin peels, let it and don’t play with it. After 12/15 years I still use cool distilled water on my skin. I use no cream except aquaphor in tiny bits if I’m terribly dry. Cosmetic companies want us to buy their products/ a despicable business really. They make us feel as though all is solved with their products. The truth is, we need nothing. You will find your skin will exfoliate all on its own. It will gently slough off as you apply cool water. Also very important is blue light glasses when using your computer or any electronic device. My skin is so sensitive that I must do this and cover myself from the nose down with a light cloth
That being said: after 2 weeks if your skin has calmed, be ready with some pure aloe. Get on Amazon. Put it in refrigerator to get very cold. Patch test just one cheek or part of a cheek. When my rosacea flares, I cover my skin in aloe about every hour. Remarkably reduces swelling and redness
Last, appointments with dermatology and an immunologist is necessary. Have you ever had an assay of allergy testing?
This seems like a lot. And it’s overwhelming but the answers are waiting for you so don’t despair! Smile and eat light for 2 weeks. 😌
Hi there - idea to get to the bottom of this - sign up for Bad Skin Clinic on TV Dr Emma in London they are asking for new people for future shows - keep records and photos she will diagnose and get you well - she works miracles!
hi Tonkie, been there my lovely, can almost feel your despair and frustration. saw your photo & my heart immediately went out to you. The time and money I’ve spent over the years - must have read everything and tried every GP/dermatologist-prescribed and internet-suggested cream, lotion, potion and antihistamine going. plagued by facial (and other) rashes all my life but not given lupus diagnosis til mid-50s & I was started on hydroxychloroquine. developed eyelid eczema, eyelids burned so much I sat with cold packs. Healthcare providers passed me from pillar to post. Told me it was blepharitis or eczema or dermatitis. gold-standard treatments for those conditions didn’t help. Had allergy tests. Found out some more allergies to add to the list. Stopped wearing make-up. Pared back skincare. Bought expensive ‘free from everything’ products. I was miserable. Unemployed & stopped job hunting because between hair loss & the state of my face I lost confidence. I do wonder if all the years of steroid creams have made my skin more sensitive and prone to react to environmental triggers. For years it was a daily battle trying to keep on top of it. It never fully cleared. Tried to avoid steroid creams on eyelids but burning was too much some days. Dermatologist prescribed Protopic to be used sparingly. Then rash just escaped control. It initially covered my orbital area but gradually extended over my face. I asked rheumatologist if hydroxychloroquine could be a factor. It’s not a common side-effect but I was already very bothered by other side-effects so I came off it. That episode had lasted 3-4 months but has not returned. I did not go back on the hydroxychloroquine. I do still have occasional facial rashes but they’re easily managed as long as I keep to my own tried & tested protocol - GP prescribed emollient cream around my eyes daily, wide-brimmed hat in the sun, La Roche-Posay Anthelios 50+, minimal skincare products that I know suit my skin, etc. rarely have to resort to steroid creams now. Just adding my own story because I wonder if knowing the label of the underlying AI disease is even that helpful. I wonder if these rashes, and maybe some other symptoms, are maybe the result of underlying disease PLUS a unique mix of hormones, stress, environmental triggers and medication rather than just the disease itself, which makes treatment rather difficult. For me taking the medication out of the mix helped. Maybe now I’m post-menopause even putting the medication back in would have a different effect. Really hope you find your own protocol. Hope the diet advice provided by OPs will be your key. Wishing you all the best x
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