I will write a post once ive navigated tgis site fully explaining a bit more about myself. But at the moment im in a very dark place with my depression and my mind keeps coming back to how much this rash affects me.
I have had it for some years now. I am not diagnosed with lupus. I was diagnosed with fybromyalgia, and probably functional neurological disorder following tests for possible MS.
I find ive done a full circle and need to approach the gp for another refferral to a rheumy but i would be most grateful for some feedback on my photos of my rash and spots on my tummy and thighs.
Stay wild, blue skies. Mandy
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Staywildmoonchild
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Well I’m not a doctor but looks very like a malar rash to me.
What are your other symptoms? Depression can be part of these autoimmune diseases too, either from the actual disease’s effect on the nervous system or from feeling so unwell, tired, changes in appearance etc with a disease.
The good news is that once you get treatment a lot of these problems can get much better. I’d definitely ask to see a rheumatologist.
I will print these photos off and some others of small bright red (round) dots and some purple (mis shaped) ones on my thighs and tummy too. It looks like a toddler has attacked my thighs with a felt pen 😂
I had both of these symptoms and more when i last saw a Rheumy but because my blood tests didnt indicate anything specific at the time then they said it was part of my fybromyalgia (very dubious about that diagnosis)
My battle for ALL my diagnosis have taken years. Endometriosis took 3 years...fybro about 15...heart issues 5 years. Its bloomin exhausting.
Anyway back to my rash (stay focussed mandy 🙃)
A couple of months ago i was really poorly and in hospital with a severe throat infection. I was on strong anti biotics and steroids (firstly by drip then oral) MY RASH IMPROVED SOOOOO MUCH! I was over the moon. As soon as the tablets ended...within a couple of days it was back! 😔😔😔
My daughter is getting married 26th may and i would love it to be gone!
Does the malar rash respond well to steroids ....or.....anti biotics?
I think a rash would only respond to antibiotics if it had become infected with bacteria but if it’s a lupus rash (and looks like it) then it would be inflammation from the autoimmune attack and would be likely to improve with steroids. I find steroids work brilliantly with almost all my lupus symptoms.
Some people don’t have positive blood tests for lupus but still have lupus. Unfortunately some rheumys don’t see past the blood tests (and give you a fibromyalgia diagnosis if your ANA isn’t positive!)
Good luck with it, photos should help. I think there are lots of people on here who get that type of rash and could advise about covering it if it’s not gone in time for the wedding. Mine isn’t too bad and I just use BB concealer cream.
I am waiting to see the rheumy they've just put me back a month : ( . My rash is circular discoid one on my chin, around my mouth and a bit on the bridge of my nose. This last week I have noticed it on my left eyelid and it is so itchy. I am also waiting to have bloods done...
I have been so down and tired this last week, hardly went out as it's been so hot here in Barcelona and I just feel like a vampire!! My rash is getting me down as I don't know what to put on it - I have a cream with cortisone in it but it hasn't helped at all. I too wonder if I will always have this. There are some good tutorials on youtube about covering it up etc. I haven't tried yet as mine is feeling very sore and irritable.
Like Melba mentions, hopefully when we get the treatment we need this will get a lot better! Hang on in there. x
So sorry to hear you are struggling. The discoid rash from what ive seen looks so uncomfortable. The one thing about mine is that it isnt itchy or uncomfortable, just unsightly and affects my confidence as it sounds yours too.
Im afraid i dont know much to give advice but I have come accross a moisteriser for babies...its called Childs Farm Moisteriser. There have been miraculous results for people with psoriasis and my daughters in laws are testimate to that too. So i gave it a go. It hasnt changed the rash but its less scalley and dry and so far by a long way the best moisteriser ive used! But...i wouldnt know if its something worth trying for discoid but maybe its worth a try?
I wish you the very best for your consultant and tgat you get the answers you need and deserve.
My rheumatologist ordered a blood test called avise. It confirmed that I have sle lupus also I have had rheumatoid arthritis for 20 years. Good luck and you can find out more about blood test @ AviseTest.com
Your rash sure looks like it’s Lupus related. Don’t give up. It often takes years or multiple testings to get a positive results. It took 23 years to get my diagnosis of Inherited Erythromelalgia. That was 4 years ago. I hope and pray that you don’t have to wait that long.
Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...
A malar rash is usually a pink or redish-coloured rash which mainly occurs on the cheeks and the bridge of the nose. 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. The picture of your rash does resemble a malar rash according to its description however, we are not medically trained here therefore it is important that you discuss this with your doctor.
For more information on lupus and the skin, read our booklet here: lupusuk.org.uk/wp-content/u... - if you would like a hard copy of this booklet to take with you to an appointment as aid in explaining your symptoms please email me at Chanpreet@lupusuk.org.uk with your name and address.
Sometimes certain situations can be tough which is why speaking to someone can help reduce any worries or anxiety that you may have. We can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me. Also, you may find our blog article on coping with depression and anxiety helpful: lupusuk.org.uk/coping-with-...
It is common for people to be diagnosed with fibromyalgia in early stages of lupus. To find out the specific tests and criteria that are needed in order to make a diagnosis of lupus, click here: lupusuk.org.uk/getting-diag...
Before attending your next appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...
I have started to navigate and read a lot of the articles etc that you have and have found them most helpful.
My rash is however permanent but flares with the sun, stress and heat causing it to be more pronounced and angry looking and more scaley if not moisturised thoroughly. I have had the rash for about 6 or 7 years now and it has progresively got worse. Its not sore at all. Currently im having some kind of flare up....whether fybro or something else. My wrists and elbows and ankles are very painful. Im very fatigued and a lot of confusion and slow cognitions....(brain fog?) I am also experiencinv my 6th urine infection this year. My neck, mainly my left hand side swells up and around my paratoid glands (ENT said, during a nasty throat viral inf, that i may just be unlucky and thats my pathology....however they were alerted to the swelling as soon as the ambulance got me to A&E)
I have a lot of neuro symptoms but my neuro has diagnosed me eith probable functional neurological disorder.
I have, tremors, fit like episodes, memory loss, unable to process even basic information sometimes, depression, confusion, dizziness and this NEW thing which i call russian doll syndrome lol. U know how one doll inside is smaller than the other, it feels as though it wobbles inside and bangs against the outter doll. Like if i go around a corner the inner one bangs or knocks the outter one.....its horrible and makes me feel sick!
I also have incredibly painful ear cartlidge...and if one more person says its becaise i lie on it i will scream lol. It only happens when im lay and always coinsides with my joints, neuro and face flare. I suffer with chostrocondritis to so i can only assume its that but the ears rather than the ribs.
Proper rubbish to be honest but i will keep smiling.
Honeybug, ive been ill since i was 17 so any diagnosis of anything sadly will come as a double edge sword of relief and dred. I also wish you the very best!
Cillfred, im heading onto that website now, with many thanks for your guidance.
I saw a Rheumy yesterday. I wish i hadnt bothered! I have bloods that suggest i have Rheumatoid arthritis but he was completely dissmissive of that, my symptoms and my rash. He laughed at me when saying "why havent you seen a dermatologist"
Long at short of it...
"You havent got Lupus because your bloods are normal so drop it now"
"You havent got RA because anyone can have high Anti CCP levels and i dont present swollen joints today"
He didnt even do an examination!
Anyway, I just wanted to update incase anyone was following my rash and diagnosis.
That's very poor from your rheumatologist. TBH, you don't need people like that. Now the search for a decent rheumy - they are out there. I have read of an AI condition that attacks ear cartilage but I cant remember what it's called. I think the purple dots you describe are also significant. I'm sure you feel very knocked back but you mustn't the give up. Someone on here will probably be able to suggest a better rheumatologist based on where you live. So sorry that this has happened but it's not the end of the road. Clare xx
Looks like a malar rash, I wash with emulsifying wax from chemist, it's soothing and really helps with the irritation. Hydroxy chloroquine really helped mine!
Haven't been on here for a while... I do read it though and have found lots of interesting and helpful advice. My dermatologist has put me on Dolquine 200mg, 2 one day, 1 next. basically alternate days. Seemed to help at first but and I was so relieved. However, over the last three months have noticed that my skin has become very thin and I am getting red patches again! I am also feeling very tired and have painful joints. Walking some days can take its toll on me and leave me feeling exhausted for days. I have tried to keep moving but there are days when I just stay in and slump on the sofa. My blood results have not shown up anything so far.
Seeing specialist tomorrow, have my list prepared.
Ah! one more thing..... my eyesight has deteriorated so much!! waiting for referral to eye specialist.
I have bought the cream you suggested but am waiting till I see specialist tomorrow before I try it. Have heard lots of good things about it. Thank you for suggesting it. I[m glad it is helping your daughters in law. I will definitely give it a go.
I am sorry you've had some knock backs, this is certainly a very bumpy rough and long journey to resolving our problems. I have been lucky with my dermatologist she is very nice and seems to understand my issues. Just wish she would look at me more rather than her computer!! Can't moan though / from what I've heard on hear I have been quite lucky with my dr's here in Spain. I will keep you posted on my visit tomorrow.
Hi to everyone on here, it's such a help to know that this site is here for us to get help and support. Rant and share. Nelly xx
Its red eythematous toped rash typical of malar rash
Connective tissue disease is cumulative symptoms and required many years to become more obvious and in your condition not enough to siad you have SLE and youarnt meet ACR for diagnosis of lupus
You need meticulous follow by serological test every at least 6 months ANA,antidDNA,antismith
CBC, GUE
Otherwise kept in your mind another possibility of malar rash like
Dermatitis ,Roscea, mitral stenosis, CTD
To treat it if you had fibromyalgia it better to start hydroxychloroquine in dose 200 mg once daily with topicals treatment of quinone ,skin emollient wtih sun protective factor (SP50)
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