Does anyone have an experience of repetitive skin flare ups on face and what worked for you to get it under control enough to allow skin to heal?
Whilst awaiting getting meds correct and lupus under control with Rheumatology had found being on steroids would help it ease, but when finished steroids it comes back. Currently on steroids for longer period (not stopping any time soon) and whilst helping with other symptoms, skin on face is not responding and getting worse, sore and have bits of skin coming off.
Seeing Rheumatology this week thankfully - but this is quite an issue as its so visual, and worried the degree of scaring that will be left.
Any experiences anyone willing to share?
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smeackles
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Thanks for reply - my daughter (who is suffering this) has been seen by both Rheumatology and Dermatology since June. Dermatologists have been good to given creams to aid the damaged, sore skin - but they say to stop it is down to the treatment and medication for lupus by rheumatology. Dermatology can't stop the lupus skin issue, just aid the discomfort and help ease as best can - will see what Rheumatology have to say later this week and pray they come up with something as the skin damage is worrying - not really stopped fully since it started in March, scaring inevitable - but hoping it can be managed soon.
hello, sorry about what you are going through. Maybe something else is causing the rashes, hopefully when you speak to your Rheumatology, they can offer better suggestion. They might also add hydroxychloroquine to the steroids because that’s what have kept my rashes under control
Thanks for your reply - its actually my daughter suffering, not myself and this is all quite new to us both - trying to support and get as much knowledge and info as possible. She has been on Hydroxychloroquine since June along side the steroids so was hoping that that would have started to show it was helping by now but the need to remain on steroids suggests not yet. Just fact that previously steroids did help the skin damage to ease off, but not now. Dermatology have been involved but ultimately they say that its the treatment for Lupus that will stop the skin damage, they can't actually stop that alone. Will see what Rheumatologists have to say later this week.
18 months ago I began the mother of all flares with skin all over getting involved. I was already on Hydroxy so they put me on high dose steroids. Like you as soon as the steroids stopped the rash returned but limited to my face, especially hairline. I began another course of steroids and this time tapered much more slowly and by a smaller amount ie 1mg. With each drop in steroids the rash returned and Dermavate cream helped to knock it back and steroid scalp treatment for my head when needed. Eventually on the advice of the dermatologist, Rheumy started me on MTX injections which took around 6 weeks to kick in, but have made an enormous difference. I had hoped to be off steroids altogether by now but every time I’ve had to go on antibiotics for infections I’ve had to stop the MTX so it has interrupted it and each time the rash creeps back again on my face, especially hairline. So I’m still on 1mg Prednisolone but hope to come off it altogether within the next month or so. The rash keeps trying to come back so my aim to eventually come off the MTX too might just be a dream. So I just keep slapping Dermovate on the rash when it appears and a non-steroidal cream my Dermy gave me when it begins to recede again. It is a long journey and after 18 months I feel I’m at last beginning to get there but I’ve had to change my life, now being SO photosensitive. I’ve had to buy Solbari sun protective clothing (hat and jacket is adequate) and I sit in the back of the car where the windows are UV protected with a special tint we paid to have done. I find the sun and anxiety/stress/worry are the main triggers of a flare and the rash returning. I hope some of this helps. Wishing you all the best and hope the Rheumy is able to help. Let us know how you get on. Xxx
Thank you so much for your post and sharing your experience. It is my daughter who is suffering and I am just trying to help find out all we can as this is relatively new to us both. We will take this info in with us to the appoint this week and see what they have to say. She has all the major factor 50 protection, hats ,and protection etc - can't avoid being outside as its part of her job at times but is very conscious and aware when outside. It is quite worrying for the skin damage to be continuing the way it is. And worrying thought it may go on and on and never really be gone (bar future flare ups). Your feed back and experiences are very gratefully received - I know everyone is different and reacts differently to medications - but all possible options are good to be considered.
So labs finally back and starting her on azathioprine alongside hydroxychloroquine and upping her steroids to 20 (along with calium and omeprazole and her magnesium). They are referring to Dermatology incase steroids increase doesn't help the rash on face - just not sure how quickly appointment will be. Asked about MTX and they said that thats the next step up after azathioprine (working from mildest treatment upwards) so won't think about that yet in hope aza works.
Am a little concerned as hear of people having issues with Aza on here.
Thanks for the update Smeackles. You can also get gastro-resistant steroids which helps with the stomach. I started on 30mg Pred and pharmacist told me to take the Esomeprozole when I got up, breakfast half an hour later and the steroids straight after breakfast. I didn’t find Omeprozole worked for me but Esomeprozole did. Everybody is different of course so I hope the regime that’s been set up for your daughter works for her. If not don’t be afraid to go back and tell them. It was a friend on the forum who told me about the gastro-resistant steroids and another who told me about Esomeprozole and they have made such a huge difference to my delicate tummy. I’m on the second lowest dose of MTX (10mg) as I couldn’t tolerate the 15mg and it has been amazing. I was offered Azathioprine, Mycophenolate or Methotrexate but opted for MTX because I could get it in injection form which was kinder on my stomach. I’m also on Hydroxy. Hoping your daughter begins to feel the benefit of the drugs soon and I wish her all the very best. Xx
So sorry to hear about your daughter's rash. I've had small flares with lupus for many years that came and eventually went regardless of treatment or not!!
However in 2018 I had a major flare on upper torso, neck and face that quickly escalated and looked appalling. I had to wait a few weeks to see a dermatologist which didn't help but her treatment was Prednisolone at 30mg per day to hit it hard and steroid ointment. This slowly worked. Rash started in late May and was starting to settle down by October same year.
It did leave some marks, not scars but reddish areas, and is always grumbling away on my neck and face so I'm still taking Prednisolone of varying amounts (15mg seems a good holding dose) to keep it at bay. I didn't think steroid ointments worked by the way! I also take hydroxychloroquine and Azathioprine alongside other medications for my lupus. I'm careful in the sun and will avoid if I can, wear a big hat, long sleeves and use Spf50 makeup.
My treatment for the rash was lead by dermatologist, not rheumatologist, and I still see her every 6 months, in between if there's any serious recurrence.
Hope this makes sense and helps you to understand what can happen. 😊
Thanks for your reply - really helpful and reassuring to hear others juggling act and getting somewhere with this type of symptom. She was put on Azathioprine briefly, but they stopped it as were waiting on labs from london before going back on it - which never came, so a month later retook bloods and and sent again - still waiting on that, maybe hear this week if thats a go or not. All the info re dermatology is very helpful - feel like we going into the appointment armed with a bit more info or enquiring about options we wouldn't have known about.
Hi nice to meet you sorry to hear how your daughter is suffering
My dad had skin involved lupus he had creams.
Tablets he had for polymyagia rheumatica steroids pills for flare that .
Discoid lupus dad had hope helps it's affects mentally when on face especially young ladies I'm sure
Because hard hide pray hope heals up has she seen a dermatologist Dr sarknay at guys hospital dermatology institute is a auto immune specific dermatologist.
I saw him I had bright red hot inflammation of face and scalp.
Wish best
That's thing steroids tablets as soon stop comes back sometimes briefly , others not so much.
Thank you - very helpful to know we can press on and hopefully get dermatology back involved again. I asked in early stage of diagnosis if this was discoid along side sle and they weren't clear - but have thought it all along.
Short comment - I've had several tiny biopsies over the years (done by dermatology), latest was last month, to ascertain that skin rash activity is caused by lupus each time. The reports back from labs have always confirmed it is lupus. 😊
A bit of both really. Take a look at the Web site and read up on the Microbiome of the skin not only the gut. It's very interesting. I used it every day to start with and noticed how well my skin felt and looked. I use it twice daily after cleansing as part of my routine.
Hello. I’m sorry your daughter is flaring on her facial skin. What I have learned is to never put steroid cream on face. It ultimately causes steroid induced rosacea which is almost impossible to control. Has dermatologist considered rosacea? It is common with lupus and is hard to distinguish from lupus rash. Steroids aggravate (prednisone) lupus skin rashes by clearing it up then coming back fast after treatment stops. There are creams for rosacea that must be researched carefully. One treatment I get on Amazon is a combination of azeliac acid and niacinamide. It is very cheap and a tiny bit goes a long way. I never use a cleanser or moisturizer if I can help it. ( I do swim in a saltwater pool). I was part of a skin forum many years ago. I learned our facial skin learns to self moisturize and washing with clear cool water is all you need. Exfoliate with a soft cloth(Amazon) once a week. I’m in my late 60s. I have cleared my facial skin of the worst flares this way. I have barely any wrinkles. I use color science powder sunscreen. I hope you rethink the steroids
We can ask about all this. She did have biopsies at diagnosis - as in the months before Lupus was mentioned she went through rosacea and impetigo as possibles until one doctor noted the pattern of the rash could be lupus and we went from there. Definitely going to ask for dermatology to get involved again as only on regular Rheumatology clinics at present.
Thank you for sharing your knowledge and experience.
Sorry to hear this but if you’ve got DLE and SCLE flare ups all over your body and face then rheumatologists are NOT the best docs to see.
You most definitely need a lupus specialist dermatologist.
I’ve got red rashes all over [arms, shoulders, back, legs, thighs] DLE? SCLE? and it is most impractical and totally inaccessible to use corticosteroid creams, lotions, ointments etc on one’s back!🙄🥹
Virtually impossible to administer without help!🙄☝️
I’m rooting for tablet systemic medication which HOPEFULLY will calm my self-destructive body down?!👆🥹
With me I was compelled to send +20 photos (most difficult selfies to take) of my flare ups directly to dermatology dept BEFORE an appt for next month!
GP was totally useless.
SAD and frustrating. No face to face appointments at all. Obstructive, couldn’t care less attitude from GP reception.
So sorry hearing you are doing battle with medical care on top of the battle of lupus against your body.
We will definitely be pressing for more dermatology involvement on this now. I am not sure its been labelled as discoid along side SLE or not - biopsies were done , will ask the question again. For he most part the main damage is face and a little on arms (so far) which is thankful given what you are experiencing. But quite severe on face. Will fight our battle when we go tomorrow.
Wishing you all the best for your on going fight for your care.
Note: red lupus rashes can be scarring or non scarring? And painful plus itchy at the same time! 🥹Sad.
DLE= scarring? SCLE=non-scarring? Latter more widespread. The clinical photos I find really scary and depressing (on this website and others).
The scary thing with lupus rashes is that they can spread and it’s most difficult to stop scratching/picking at these rashes. Wash hands frequently to prevent infection from touching.
Note that steroids (as others have said) on the face thins the skin and raises blood glucose!
One last comment, possibly! Take photos of rash, how it progresses, gets worse or gets better. My first appointment with dermatologist I had photos taken at the hospital as she hadn't seen the like before. 😊
Yes she has done that in the past and Dermatology have used them to assist. Just not been seen by them since diagnosis. Will push for this at the appointment this week. x
Have you had a skin swab? It might be a skin infection. I occasionally get this, and it occurred whilst on a long-term dosage of steroids. Also, if the steroids are not making any form of difference, quite possibly it could be an infection of some sort, or just a general reaction to your body adjusting to the corticosteroids. Steroids topical or orally, are the go to for Discoid Lupus-related rashes. Its worth asking your Rheumatologist for a Dermatology referral but bare in mind waiting lists are quite long, now a these days.
She did have biopsies at diagnosis in June confirming lupus (just unsure if discoid and SLE)
Dermatology have seen her - and Rheumatology sent images of face and they came down to see her at that appointment then. Just hoping its possible soon.
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