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    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

    25 Replies
    oldest • 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 &...

    1 like
    Reply

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

    Reply

    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...

    Reply

    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 -...

    Reply

    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...

    1 like
    Reply

    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.

    Reply

    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 :)

    Reply

    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!

    Reply

    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.

    Reply

    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

    Reply

    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

    Reply

    Thanks for the response!

    Reply

    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

    Reply

    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

    Reply

    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

    Reply

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

    Reply

    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 .

    Reply

    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.

    Reply

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

    Reply

    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

    Reply

    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

    Reply

    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.

    Reply

    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!

    Reply

    What you've said here is SO ME! My Dr has said that he know I have an autoimmune problem, but can't pinpoint it. He did mention Lupus, but said no because my ANA was negative. I have the butterfly looking rash on my face that.sometimes itches, but also oozes clear liquid. I also get a rash on my arms that didn't respond to meds. At one point I was on Prednisone for 10 days, and still tested positive.for inflammation. I have all the body aches/joint pain. Stiffness. Fatigue. Recently headaches/eye sensitivity. An"foggy brain" for lack of a better description. A thyroid condition. I've been known to run a low grade fever for no apparent reason. Also told that I have fatty liver disease/liver is slightly enlarged. Also have had kidney stones. I'm sure there's so much more I am leaving out. I'm just sick and tired of being told "we know there's something going on, but don't know what". To top it all off, I have no insurance so was going to a free clinic. I had move, and now I'm no longer able to be seen there, so I haven't seen a doctor in a year or more.

    Reply

    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.

    Reply

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