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
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