Burning skin

[Ladylupus]

Good morning everyone, I'm sure this may have already been covered as a topic. I recently had a few weeks of pompholyx eczema.I first got it almost 40 yrs ago and have not been too bothered by it. This recent bout, however, was more severe than usual. Affecting both hands and feet.

Running alongside that, I have the SCLE rash which is present in large or small patches all over. Including my face and scalp. What usually happens is I get several days of burning itching which is unlike the eczema. (I would say it's worse). I'm having it on the back of my head from ear to ear and downwards just now.

Can anyone advise as to scalp soothers and how to cope with the ensuing skin flakes that will follow. I know it's not dandruff .

I don't see my dermatologist until October but am taking pictures for reference. I have a particularly glorious patch on my shin just now which is quite florid but not much in nuisance factor .. it's just hanging around. Cosmetic value ? Nil points! It's the start of a new area that brings the hell- fire.

Have a good day everyone. Xx

[Hidden]

I don’t have what you describe at all thankfully but I have had similar when I was young and had various kinds of eczema right up to menopause. I was at the dermatologist on Monday and showed her my nails which she thought were affected by lichen planus perhaps. I looked this up and it causes rashes and burning - and is autoimmune and sometimes associated with Lupus and Sjögren’s plus other CTDs. Worth asking your dr about perhaps?

[Ladylupus in reply to Hidden]

Hi TT, I had considered Lichen P. Perhaps I ought to present myself at the GP for her opinion. She does admit to not knowing much about lupus etc and is learning from my visits!

Have a good day xx

[Barbara17]

Hello. I have scle and Sjogrens. This year has been awful. My skin first broke out in March/April and it’s just been one thing after another since then. And for the first time my face has been affected too. In the past it’s ‘just’ been all over my body but that is easier to deal with as it can be covered by clothing. I am using protopic ointment on my face and dermovate on my body but really, as you probably know, only time will heal the sores. One thing I did find out is that Sudocrem can help with the itching and redness. And the best cover up for your face, when you venture out, is good old Rimmel concealer stick. As for your scalp I find that the Simple range of shampoos is the most gentle, I use their shower gel too. I see my dermatologist in October but I’m not holding out too much hope that there will be a quick fix. At least what passes as summer seems to have gone for now! Hope things improve for you. Sending hugs.

[Ladylupus in reply to Barbara17]

Hi Barbara, thanks for the tips. I haven't used the simple range but I'll give it a go. Since I can't smell anything now, scented products don't matter like they did. I do use their micellar water and used their soap when I was having radiotherapy for breast cancer. I'll try anything to get rid of the raging burn !. xx

[Wendy39]

Hello Ladylupus

I'm sorry to hear that your SCLE rash is causing you an issue. If you still have the rash then your disease is still active. Are you on any medication to get this under control? Do you have any topical creams or lotions? I still have active rash on my scalp, but with medications and wearing a hat every single time I go outside to protect my scalp from UV, the area is slowly reducing in size. It's taken 5.5 years of medication so far to get it to reduce in area.

I was told I had SCLE in 2013, but later found out that it was actually SLE, but know others with SCLE. (I ended up having a punch biopsy on my neck to confirm what the rash was).

I am very photosensitive and take great care when outdoors. I am guessing you are very photosensitive and this is why you are getting the SCLE rash. Are you taking precautions in the sun?

Best wishes

Wendy

[Ladylupus in reply to Wendy39]

Hi Wendy, yes. My dermatologist told me I had to stay " Pale and interesting" so, much as I enjoy seeing lovely weather, I rarely go out in it. Not without full battledress anyway!. We tried cutting my hydroxychloroquine down to one tablet over winter and,at my visit to him this April decided that was not a good idea. I have all sorts of emollients and use Betnovate but not on my face. Being only about 2.1/2 years into this I never realised how long these rashes go on.....and on. Xx