Does anyone with Lupus/SLE/APS get this type of facial rash/blistering?

Does anyone with Lupus/SLE/APS get this type of facial rash/blistering?

Hi there,

I get this every few weeks, varying severity. My face just starts leaking in patches and then it sort of.. blisters. When it heals it leaks the scab off again. Literally I've had a tear rolling down my cheek last time. I'm sorry for the gross picture but if someone can relate I'd appreciate the help. My GP doesn't know what it is as apparently it doesn't fit with anything he's seen before. He gave antibiotics but they didn't seem to make a difference. This spread to my other cheek and I had one patch under my right arm. The only bonus of this is that it left a heart shaped scar on my cheek for a while. Made me look like a leper though. :( This pic was taken when it was close to being 'over'.

More pics of it in progress here: medsoph.blogspot.co.uk/p/bl...

Thanks!

x

Last edited by

35 Replies

oldest β€’ newest
  • Hello medsoph

    Hope you get some good replies. Will be following them because am identifying with this...am vvvv much feeling for you

    probably a long shot, but your pic & descrip remind me of the recurring facial (mainly, but also on my arms & trunk) rashes I experienced before my infant onset systemic lupus was finally recognised 4 years ago. Since lupus treatment began in 2011, i haven't had these type of rashes recur (I wasn't informed of my infant & teen lupus diagnosis, so when I moved to the UK @ 21 in the late 1970s the nhs treated me until 4 years ago, without spotting the underlying lupus). I thought, like you, that my version of these sort of rashes made me look like a leper!

    My gp tried various prescrip steroid topicals (dermovate, betnovate etc) which just made my similar rashes sorer & more irritating (they were a horrid mixture of soreness & prickly itchiness, but scratching them gave no relief and just hurt....plus got the leaking going which freaked me). My GP gave me dalacin T topical solution & lotion (prescrip antibiotic) which was better than nothing & at least gave me the feeling I was treating these horrid rashes. They took weeks to settle down each time.

    At one point, dermatology informally diagnosed my version of these rashes as perioral dermatitis because they often occurred around my mouth & chin area. This was a v sloppy, off hand diagnosis given towards the final stages of a severe episode with a big leaking rash on the lowest part of my face between my lips and chin....by the time the dermatologist examined me the rash was nearly gone.

    Recently I learned that these rashes were possibly Lichen Planus, which can overlap with SLE. Lichen planus affects the skin, anywhere on the body. My version of these rashes does seem to have flared due to exposure to sunlight & heat. I found out about the lupus lichen Planus overlap recently because my dentist told me she thinks I've had Oral Lichen planus for years. Oral Lichen Planus often occurs alongside skin lichen Planus. am seeing a periodontist about the OLP in feb....probably for biopsy. At my 3 monthly rheumatology clinic in March I'll be asking about the LP/SLE overlap thing

    Sadly, I wasn't as on the ball as you are: didn't take pics of my visual skin symptoms....just wrote up desciptions (but these particular rashes were so unexplained that they freaked me so much I'll never forget what they were like). Since my lupus re diagnosis 4 years ago, I do take pics of everything I can...my gp & rheumatology clinic love my pics!

    Take care, good luck, hope you figure this out soon xo

    Ps

    just checked your blog out. Great pics. Your visuals & symptom profile have quite a lot in common with mine generally. Are you hypermobile Ehlers Danlos type? Have drs talked to you about simultaneous raynauds & erythromelalgia? + i too have a neuro cerebral complex of symptoms (responding well to myco & pred tapers) which began to be more severe in my 30s...

  • Wow, thank you so much for such a lengthily response and for visiting the blog :).

    Nope Dr's have never mentioned Erythromelalgia and the hypermobility is only joint based.. I think! If I even asked them about the above and possible interactions they would cart me right out the door into the loony bin. I see one of the best Lupus people here in the UK yet still when I go to the clinic I just think that I appear complicated so he shoves me out the door as quickly as possible. I'm thinking I might have to pay to get a private appointment just so that I can see him for a little longer.. or pay for him to read an email or something. It would be so much easier if he could just read a few of the blog posts and ..understand. But given 5 mins of an appointment with the 'so how are you' thing.. Nothing can be fitted in in a sensible fashion. I just don't really know what to do. It's so hard to make any of this make sense to them without making myself out to be a massive hypochondriac.

    When things started back in 2012 and I realised Drs weren't taking me seriously I started taking the odd photo or recording the odd video. Im not sure whether to put them on the youtube channel or not. When the above rash started I thought it was the same as usual, felt the side of my face and it was wet. So I thought it was a good example to show the dr at my next lupus clinic (for APS - which doesn't have facial rash as a symptom I think!). But it spread out more than usual so I decided tho take a picture each day, I'm very glad I did.

    I guess the hardest thing for me, that's breaking my brain at the moment, is not actually knowing or understanding why this is happening and how to fix things.

    Thank you again so much for your reply! I'll try and update this after my next appointment but the clinic keep pushing it further and further back.

    Many hugs,

    xxx

  • Thanks for your wonderful reply.

    And: you're vvvvv welcome.

    I can fully relate to everything you're saying. This process of ongoing diagnosis & treatment is tough! since 2011 when I finally was at least able to put a label (lupus) on the cause of most of my chronic symptoms & secondary conditions, & my inspired rheumatologist's treatment plan began to really improve my wellbeing, it's been the solidarity & coaching of forum members + of my local lupus UK support group + my clinic's specialist lupus nurse that have most helped me cope with this tough process. So, I'm glad you're here and I wish you all the very best. Seems to me you're doing a great job of this

    If you haven't already, I hope you'll think about looking into contacting your local lupus UK support group. Our group has people of all ages...with all types of lupus. The coffee meetings, AGMs and info events have made such a positive diff for me

    Sounds as if your rheumatology dept doesn't have a specialist lupus nurse...this is a pity....in my experience, good specialist nurses are a great asset to clinics, able to contribute that personal touch & expertise & humanity that busy consultants can seem too pressured to be able to summon up in clinic

    Take care, take heart & keep all this great work up...your blog is already helping others as I type!

    Let us know how you get on..it's great to meet you

    XO

  • Aw, you lovely lady! I've added you to the follow list :)

    I'm not entirely sure that I count as being able to be part of such support groups really. I mean this one is great and awesome, but I don't have a firm diagnosis of Lupus, so far seronegative APS, does that count? Though I don't know what results presenting these photos to my Lupus clinic consultant would be. Might just be bacterial stuff.. oor something. I really don't get out of the house much, especially at the moment! I attend the london main one, I've never heard of nurses being given to them but I'd assume that my consultant doesn't think I need one.

    Thank you for the encouragement on the blog side of things. It's now 5am and yet again, my body is preventing sleep so it's time to catch up to posts and medical stuffs. Not sure that's healthy to be doing but oh well! I think the cold weather is just finishing me off :).

    *hugs*

    x

  • Yes....the being relatively housebound thing does limit options, I know. Thank goodness for the Internet: your fab blog, this forum etc get you out & about!

    Many many of us are seroneg: this definitely doesn't disqualify us from being part of lupus UK....and there have been many excellent threads on here discussing sero negativity over the years...which have helped me a lot to get that bugbear in perspective

    It's great to meet you. Am glad you're here

    XO

  • I get this on my fingers and palms.....it erupts particularly when I accidently get 'glutened'.

  • I get butterfly rashes on my thighs but nothing like your rash..I hope u get good response and find a cure for this rash..xx

  • Thank you so much!

  • I don't know what these things are - I just wanted to say that I've read your blog and my heart goes out to you, what with all the walking and speech issues you've been having. What meds are you on and why aren't they controlling your APS sufficiently so that your brain is more protected against these episodes?

  • Thank you, that's really very kind of you. I don't even know if my blog makes any sense but it's nice of you to have had a look through. To be honest I think I'm too much of an odd case for the consultant or GP. I don't think I can present myself in any sort of fashion that doesn't make me look entirely mad :)

  • Hi medsoph,

    Has your GP referred you to a dermatologist? This may be the best course of action if they are not sure what the rash is or how best to treat it.

    You may also find our booklet on skin involvement in lupus helpful to read - lupusuk.org.uk/images/pdf/s...

  • Hi Paul!

    Thank you for your reply :)

    No not yet, he said if I get it again to go back and he will look in to sending me on to one. I also didn't want to waste the time of a dermatologist if this was already linked to APS/Lupus or similar and it's something I should wait for my consultant for.. if that makes sense? The only problem is these seem to appear very specifically every three weeks or so, it's more than likely when I actually get an appointment, they won't be 'up'. Thanks for the leaflet, I will take a look now :)

    x

  • I have similar spots blisters that if squeezed leak a clear liquid and then blood. They dry up, peel and then clear up to new pink skin and do not leave a scar. I have discussed the spots with my Rheumatologist and he believes they are caused by Azathioprine. I take 100 mg per day soon to rise to 150mg.

    Best regards

    John

  • Thats how my DLE discoid lupus started when i was about 20. I was given a steroid cream Dermovate and told to use a total sun block. It may leave scaring so its best to catch it asap.

  • Hi Gary, thank you for your response. So did yours look similar to this then? Did you get it randomly or every few weeks? My cheeks are already very very faintly scarred, nothing much, no one would notice but me. I'll look up the medication, thank you :)

    x

  • Mine where similar but not as frequent, being young I just ignored them for a long time and they did get larger. You may find if your catch some sun the scars will become more prominent and go red. I wear a total block now so dont get the blistering but I waited a long time to use it so my skin is pigmented quite badly now. (see my other posts) for a pic.

  • My leper face really scared my niece and nephew I think, bless them. It's not the most fun thing ever. I'll get some proper sun protection for my face the next time I see some.. It's just that due to my general ill state I'm very rarely outside in the sun. Thanks for referencing you're other pics, I took a look and yep, can certainly see! Poor thing!

  • I get this on my forehead! When flaring or prior to a flare I get a bad butterfly rash on my face which is worsened by the heat and usually relieved by prednisolone. The blisters however have only been over the past few months (been flaring with lupus nephritis but have never experienced the blisters before this particular flare) and largely on my forehead, occasionally a little on my cheeks. I can't link them to anything in particular other than the flare itself and nothing seems to relieve them except for when they eventually dry up of their own accord. I am sorry I don't have any other information to offer or advice other than saying I occasionally get something similar myself!

    I hope you find some helpful advice very soon!

    Marni :)

  • Thanks for the response Marni! I'm sorry to hear you've been through this stuff too, that's terrible. So the stuff on your forehead looks and behaves like this? Does it itch or hurt at all? Does it tend to 'weep' its own scabs off?

    Many hugs!

  • Hi, as Paul suggests, ask your GP to refer you to a dermatologist. It looks very similar to what happened to my skin when I was diagnosed. Mine started as a sore red patch on my forehead. The dermatologist did a skin biopsy and that showed discoid lupus. And within weeks it consumed my whole face and scalp. I didn't venture out for a couple of months as I looked horrific. At times it was put down to lupus flaring up and allergic reactions to medication. And at its worst, it covered about 90% of my body. My dermatologist thinks I may have psoriatic arthritis as I get crippling joint pains too.

  • Thanks for your response! I'll try to send a pic through to my consultant and see what he says. I'll try and get an appointment to see a derma but I'm concerned that there won't be anything there when I do finally get an appointment.

    What you've gone through sounds horrible.. I hope that you have at least found some happy medium with medications.

    Best wishes,

    x

  • Hi I do get this but its mostly on my arms and back and a few on face i was told by my gp its discoid lupus, i have to use a steriod cream it does help but it really things the skin,

    hope you get sorted x

  • Thanks for the response!

  • Hi I've got this at the moment! I've got one large one on my forehead and about 5 on my scalp! Yes, they are 'weepy' and it makes you feel horrible, so you wash your hair and although it had started to scab, it goes back to being weepy again! Most of the time it does leave scars unfortunately :(

    My Rhumi has said that it's Discoid Lupus and have tried every cream going, but doesn't really help.

    I take Azathioprine 100mg a day, and I do think that because it suppresses your immune system, it can't heal properly !

    My consultant that I see at my local hospital is wonderful, she must dread calling me in, because out comes my notepad and I tell her all that's been happening in the last 3 months, new symptoms , new pain, strange rashes, lupus fog etc etc.....

    I know I'm lucky to have her when I read what some peoples Drs are like. I used to go to st. Thomas hospital, but the journey and time waiting exhausted me, and all you got was a rushed 10 mins! He admitted that I didn't fit into 'a box' and that I was not the usual case, sometimes baffling him.

    I hope that you find some answers soon as I do know what you are going through!

    I did take a picture of my forehead on the ipad but I don't know how to put it on this blog!!!(I'm a novice !)

    Take care

  • Hi MrsWitch,

    Thanks for the reply! You have this too, oh my goodness! It would be really interesting compare. On your scalp, ouch! I guess I'm lucky. Though it wasn't pleasant waking up having to tear your face away from the pillow where it had got stuck. That really stings. Having it on the scalp must be terrible!

    I know what you mean about the times at St.Thoms. I go there too and the trip alone makes me so ill for days after, the wait time is immense. One time I waited for 4 hours. The visit is exhausting but my doctor is a lovely man. Sadly, I think he just finds my tedious now! Would be nice to have someone closer really. It's really reassuring to hear so many have something similar.

    Hope your forehead heals up soon xxx

  • Hi again

    Reading other posts, I also have them at the top of my back now. As you said, this sticks to your clothes and makes you feel really yucky!

    I've now resorted to using SUDOCREAM(for babies) on my scalped forehead, it doesn't look great but it does create a barrier.

    Will let you know if it helps!

    Hope yours are healing xx

  • Scalp and forehead! The other sounded like I'd actually scalped my forehead!! Getting tired xx

  • I empathise with you at the age of 17 my lupus reared its ugly head the first sign was my face it became so raw and inflamed then I had pleurisy and all the complications that come with S L E you remind me so much of myself its hard to say be strong as I know what you are going through .

  • Thank you for taking the time to respond. I really appreciate it. It's not the prettiest thing in the world to have.. I've written to my consultant today and sent along the face pics. Hopefully something positive will come from it.

  • Hi, So sorry about your facial rash, I suffer from SLE too, in the past I had simi

  • So sorry about your rash, am a SLE patient too, in the past I suffered similar thing at my back, which left big scars at my top back, I think this happens when the Lupus is active, please let your consultant or GP refer you to a dermatologist for treatment. Best of luck.

    Agatha

  • Hi Agatha,

    Thank you so much for your advice and I'm sorry to hear that you had a horrible time with it. I don't think I technically have a diagnosis of SLE yet, I have a seronegative APS one but on some forms it says Sero-SLE so I don't really know :/

    x

  • Hi Medsoph

    Ooo i see, that's a different thing altogether i think. All the same, please get your GP to refer u to a dermatologist. Best of luck.

  • So Seronegative SLE just means that it doesn't show up in the specific tests that are done to confirm SLE. I have the same exact thing! So you do in fact have SLE. Your blood work will usually show the typical autoimmune stuff such as; high WBC, High Creatinine, High or Low Sed rate, and a slew of other stuff. But when they do the ANA blood test (Anti-Nuclear-Antibody) it will show up negative. So for this reason, it is very difficult for the docs to say that what you are experiencing is due to having SLE. I finally received my diagnosis of Seronegative SLE about 5 months ago. This was after 8 years of them putting me through a battery of tests with no answers. Of course my very first diagnosis was Fibromyalgia...being a Medical Assistant and almost making it through Nursing school (that is until my body prevented me from being able to go any further to actually graduate) I dreaded and despised that diagnosis!!! I know how the medical community looks at people with it and it is appalling!!! The diagnosis is a b.s. diagnosis!!! Pretty much what the Dr is saying is that "Ya, something is wrong with you, but I don't know what is is"! After living with chronic pain (throughout my ENTIRE body), suffering nerve pain, memory loss, failed medications that were supposed to help, major depression, Panic Disorder, Anxiety Disorder, developing ARDS (Acute Respiratory Distress Syndrome) and being on life support for 11 days, blood clots (DVTs in both legs and multiple PEs in all five lobes of my lungs), lesions on my scalp, face (which makes me look like a meth addict and is super embarrassing), arms, legs and back...and a couple of things that I am sure I am forgetting. My Dr was able to without a doubt diagnose me with SLE. But Seronegative because no blood test has confirmed it. It is very difficult to diagnose SLE when you have Seronegative because there are so many other problems that SLE mimics. Sorry for the novel. But just know that because you are Seronegative, it doesn't mean that you do not have SLE. My heart goes out to you and everyone with SLE! Just because I have with it and know how very difficult it is to live with. Prayers to everyone!

  • I have been reading your posts and the replies with interest. The rash you have is very like what I get only mine is on my legs. I have no diagnosis as yet. Have only seen a rheumatologist once, second appointment is in April. I was seeing a dermatogist. Saw me for six months then discharged me without telling me! Only found out from my GP who said I had been discharged because Dr X doesn't know what it is! He never did any tests, biopsies or anything! Now I am hoping that my rheumatologist Comes up with an answer. He has already had me referred to various departments for tests. No results though until I see him again in April.

You may also like...