subacute cutaneous lupus: Just a query really, can... - LUPUS UK

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subacute cutaneous lupus

madhead profile image
13 Replies

Just a query really, can the skin rash itch with SCLE, mine has never itched but recently where the rash is i itch like mad. looking on the web its states that this kind of Lupus doe not itch but i beg to differ. i plaster myself in high factor sun cream even when i am at work just in case the lighting affects the skin.

13 Replies
kittykat68 profile image
kittykat68

It does itch I have the scle too, my dermy gave me chlorophenamin ( pirition) it works wonders and oilatum as my skin is really dry, hope that helps x

madhead profile image
madhead in reply to kittykat68

Thank you too kitty, for your advice .

Hope you have a good week end x

Wendy39 profile image
Wendy39

Hello Madhead. It is nice to hear from another SCLE sufferer, if you know what I mean. I get very itchy. But I am never sure if it is the lupus, or eczema / extremely dry skin - as I have always suffered from that. I have varicose veins too and have been diagnosed with is it venous eczema? I can easily scratch my legs until I make them bleed. Anyway, due to my many allergies and itching I now take two anti-histamine - hydroxyzine 10mg and cetirizine hydrochloride 10mg, as well as the 200mg x twice a day of Hydroxychloroquine. I also have a choice of 3 different strength steroid creams to use. Betnovate for my legs. My head also gets itchy and I am sure this is sun related, as I have never got rid of the lupus rash at the back of my head and neck, that was there when I was diagnosed 19 months ago. I have tried various creams on my skin, in an attempt not to have to use steroid creams all of the time. Holland and Barrett Dr Organic range - organic products are good. Coconut oil and manuka honey have worked. But I am now using H&B Perfectly Pure Virgin coconut oil as a moisturiser and it seems to work. I have Extremely dry skin on my feet and toes at the moment, like they are going to crack and bleed at any time, so i am putting coconut oil on my feet at night and putting socks on to sleep. So far it has stopped them cracking and I am seeing a slight improvement. Fingers crossed. As far as heat/light causing your itching. I dress from head to foot to cover myself and only have my feet, hands and head exposed. If I am outside for a long time I wear a hat. I have worn sandals so far this year, as wearing shoes has been unbearable and I get athletes foot if I don't get air to my feet during the hotter summer months. I find I cannot wear summer clothes with factor 50 on my skin - it just isn't enough for me. It gets very hot though! The joys of lupus in summer!

madhead profile image
madhead in reply to Wendy39

Thank you Wendy, this is still new to me i am going to try anti-histamine.

I too have dry skin and have been using AVEENO it worked for a while but i think i need something stronger like Betnovate that you use, i have tried this when i thought i had just eczema. i will also try the coconut oil you suggested too.

This site is valuable to me as i think only people who suffer from Lupus can

give real advice on what works and what doesn't work. i dread the heat and sun now as it makes me low in mood and that my life style has to change.

i did a load of ironing this morning just to stop me thinking about the lovely sun out there today. at least i have been productive!

I hope it eases for you

Best wishes

Wendy39 profile image
Wendy39

You are right. Only fellow Lupies understand. And not many people have the SCLE form of the disease on here. I check on here regularly and I have gained valuable info. At my rheumy appt a couple of weeks ago, she ordered usual bloods but also tests for my allergies, pet dander, hat fever, tree pollen etc, which is more Immunology than rheumatology, but I am interested to see the results as I think my allergies were totally out if control and contributed to my lupus being triggered. Lovely to hear from you. I am off to tackle my ironing now whilst the rest of my family enjoys the garden.

madhead profile image
madhead in reply to Wendy39

lovely to hear from you too Wendy, the last allergy i had was on my eyes earlier in April they were so itchy,dry and sore so i did take anti histamine which worked so i am going to try some for this itch. make sure you don't overdo the ironing and make sure you have time to relax.

Enjoy your weekend :)

Footygirl profile image
Footygirl

Hi madhead, love the name!😀

Just to put my tuppence worth in. I have Diabetes and have regular feet inspections. The chiropodists stress moisturiseation but really goes to town if I apply cream between my toes as it brings horrible consequences, so do try to apply your soothing cream sparingly there. Do you have a NHS chiropodist? See if you can get regular appointments with your local team, via your GP. I really think you need support with this.

Sympathy over your itching, I had AI Hepatitis and itched all over for months!

Best wishes, Id say fingers crossed but that would be worse!

Take care

⚽️

madhead profile image
madhead in reply to Footygirl

Hi Footygirl, does this mean you play footy or is mad on football? nice to hear from you. Not sure why i called my self Madhead i think its because at work my friend and i are always acting the goat and singing, my colleagues think we both are mad. it keeps us sane. i work with the Diabetic dept so if you need any advice i can always ask our Consultants.

don't have it myself but i know how it affects people. I use peppermint soothing cream on my feet and my feet feel smooth and cool rather pepperminty .

just been to town and to theTheatre saw SISTER ACT it lifted my spirits for a while.

I have a apt with my Derm Consutlant on 31st july just had my second bloods done i would like to know the results to see if there are any changes while i have this flare up.

hope your feet feel better soon Footygirl.

best wishes

Footygirl profile image
Footygirl in reply to madhead

Just footy mad, madhead. Soo enjoying our girls in World Cup. Hardly any horrible tackles, only Canada so far with dodgy decisions. Anyway nothing to do with anything except watching men stresses me out so not so good. Girls, really enjoyable watching

Preaching to the choir, apology.

Nice minty feet hm. Nice

⚽️

kimc profile image
kimc

Hi, my rash itching likes crazy not just when I go out on the sun, but also the heat, worry, stress and anxiety. I had so many types of steroid creams to switch back and forth...I also take histamine if I color my hair to control rash on my scalp afterward, and not to blown hair dryer at all, but easy styling hair without pulling it. Meditation and do one thing of the time to be helpful, anxiety seems to really affect in a lupus person.

Hope it helps a little.

chrisj profile image
chrisj

I was diagnosed with mild SLE...systemic lupus in 2005

I have a dry skin, been dry ever since I can remember and a few months ago big red whirls appeared at the tops of my legs....they itched then felt a bit sore, the skin broke a little and I decided to wait to see if they'd clear up without making an app to see my gp. I've no idea if they're lupus related or not but I have seen pics of skin lupus and the whirls looked very similar..

I persevered with my own moisturising stuff, just shop bought no medicated ones and keeping them clean. As times gone on they have faded, bit of scarring there especially on one leg but for the most part they've cleared up....I see the hospital nurse in august so will mention it to her, I forgot at my last rheumy app in february. I'm curious as to what they were and why they flared up like that..hoping it was a one off

lupie-Cathy profile image
lupie-Cathy

I have systemic lupus but still have the itchy rashes they drive me mad I've been told it's just dry skin but surely I know the difference between dry skin and itching so bad that I sometimes make myself bleed too. Gp prescribed double base gel and shower gel works most of the time as long as I use it every single day but someday's you just don't feel like getting up let alone plastering yourself in cream and it still doesn't stop the persistant itching in the patches I get!

Cjgj profile image
Cjgj

Hi when I had rash bad I was given Adex Gel it's a highly moisturising with anti inflammatory thus does make skin feel really smooth and was told to take 4 piriton a day hope this is any good

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