Cutaneous lupus

[Biscay]

Hi, I've just joined the group following a diagnosis of cutaneous lupus. My skin is affected on my arms, shoulders, back and chest and a few smaller spots on legs. I am waiting to see the dermatologist again so they can start hydroxychloroquine. In the meantime I am applying SPF 50 to the affected areas and I also have tacrolimus 0.3% that I'm supposed to use twice weekly now. I don't actually think it's been that helpful. Has anyone else done anything different to try and control the rash? Nothing seems to help, topical steroids make it much worse. Thanks in advance

[Lizard28]

My dermatologist prescribed dermovate which helps keep mine under control. Also Elecon but I only use that very sparingly. It just never seems to go away completely. I take hydroxy as well. When I get stressed if definitely flares but I guess this is going to happen a lot. Sun cream and hats when sun is out.

[Biscay in reply to Lizard28]

Hi Lizard28, thanks for your reply. I definitely think a very stressful period in my life precipitated this rash. I'm starting to realise that I may have had mild autoimmune skin issues a very long time.....odd skin tone etc. Never had anything like this rash before though. How long do you need to apply dermovate before you see an improvement? I have only used one application but stopped when the rash was so much worse the next day, big red raised angry looking lumpy areas.

[Lizard28 in reply to Biscay]

I usually have to use it for at least 5 days before it’s under control. I do use dermol shower cream as well which helps. I also have dermol moisturiser.

[Biscay in reply to Lizard28]

Thanks, maybe I should try it for longer on a small area to see if things improve.

[Newsystem23]

I use elecon, take hydroxychloroquine and use 50 spf sunscreen but it still doesnt stop my flare ups which are mainly on my face, arms and backs of hands. I have learned to reapply sunscreen more often both indoors and outside. However, i do think stress and possibly some of the things we eat and drink can definitely be triggers. Its all a learning curve and we are all unique, However, it is so reassuring and supportive reading everyones comments and experiences. I dont feel so alone on this journey. Thank you

[Biscay in reply to Newsystem23]

Thanks for your reply NewSystem23. Can I ask what foods etc you have found to trigger your rash? Also, do you just apply the SPF 50 to exposed skin or everywhere including under your clothes? Thanks.

[Newsystem23 in reply to Biscay]

I only apply spf 50 to exposed skin. I use boots no 7 moisturiser 40spf to my face and then boots perfect and protect spf 50 medium on top. This is a tinted sunscreen or bb cream which is really good at toning down the redness so im not embarrassed to go out. It actually makes your skin look quite healthy. Its pricey but sometimes i get 3 for price of two and then a £10 off when i spend over a certain amount. Its only been a few months since i was diagnosed with cutaneous/discoid lupus amd ots msinly on my face, arms and backs of hands. At one time i couldnt put anything on my face bcus it was so sensitive, so i feel lm learning to manage things a bit better. Also ive found that ambre solaire advanced sensitive spf 50 sunscreen is good for arms, legs that are exposed to sunlight or artificial light.

[Biscay in reply to Newsystem23]

Thank you, that's really helpful. I have a couple of SPF 50 products but at the moment I'm unsure how sensitive I am to artificial light so I'm applying lotion to exposed skin even when I don't go outside. So far it doesn't seem to have reduced the rash but maybe early days. I find that CeraVe lotion is ok as a facial and body moisturizer and doesn't seem to irritate.

[M0wnt]

Hi Biscay,

So I was diagnosed with cutaneous lupus two years ago. The rashes haven’t eased until I came off HRT and that has calmed them down. The hydroxychloroquine only helped a very small amount. I also get massive joint pain, stomach pain but the dermatologist only sees me for skin.

I have found I can use no normal skin washes apart from nice natural soaps. I can’t even use the simple. I have to stay out the sun which is so hard as I love being outdoors so have had to cover my garden.

Everybody that heared I had lupus (I worked in the NHS) said oh you can have a normal life it’s fine. They don’t live with it, I get polarised with what to wear, what time I can go out, the heat affects me as much as sun so my clothing is hard to get right. I now live in cotton loose clothing, and I bought a large rimmed hat.

I have also become allergic to so much food that I used to love such as earl grey tea, spicy food, normal tea…all makes me vomit.

So I find prevention is better than trying to make the rash go once it’s there.

Keep strong.

Munt x

[Biscay in reply to M0wnt]

Hi Munt, thanks for your reply. Have you managed to completely get rid of the rash anywhere? Mine seems to clear a bit in some areas but then comes back in full force and in new areas. As I said, mine doesn't seem to respond to any topicals and I'm yet to start hydroxychloroquine.

[M0wnt]

It hasn’t gone completely but has stopped the spots from growing into giant patches. And as you said it seems to be one goes another comes. The cream Elon and some others just made it worse so I stopped using them. And now I use zero seems emollient all over my body and make sure I have no sent or washing products that contain limonene in and it has helped to calm it….and hydroxychloroquine. But stress also makes it a lot worse I think as I get bad rashes all over the Christmas period, and then don’t even start when it comes to summer 🤷🏻‍♀️ I mean I have to choose to put up with some rashes if I want to go and get fresh air.

It is very frustrating but I have come to accept that it is what I have to live with now. I don’t want to change medication if it was offered as I know the medication isn’t good for you either, so it’s the lesser of two or more evils 🤣.

Good luck.x

[Tiggywoos in reply to M0wnt]

Mine is always awful at Christmas too ! xx

[Tiggywoos]

sorry this is short but just wanted to chip in ! Certain foods make big difference to me .. garlic 🧄 is the devils work so is anything “aged or fermented ” . Tomatoes also make my rashes worse alongside spicy food . I read once that histamine producing foods not great if you have autoimmune diseases . I’m not a dr 👩‍⚕️ this is just my opinion . Take care xx

[Biscay in reply to Tiggywoos]

Thanks Tiggywoo, that's interesting. I'm trying to reduce my sugar intake to see if that helps, that includes wine unfortunately!

[M0wnt]

Tiggywoods that’s interesting to know, as I have been really sensitive to the smell of garlic and I use to use it in everything. Diet can help a little just by admitting these things that I have suddenly stopped been able to tolerate. I can’t drink anything other than water and a coffee in the morning that I refuse to give up. I can’t even drink squash! It’s just sooooo frustrating!

I want to go back to GP to discuss it but I know it will just full on a bewildered dr who will just throw more medication at me 🤷🏻‍♀️ . And the say it’s just cutaneous lupus but if affects our stomachs so bad it’s another organ which should be SLE but the GP doesn’t seem to have a clue about how to manage lupus or when to refer to the specialist.

[Cutaneous]

I’ve just joined the group. I have autoimmune problems and have been placed under the Sjögren’s umbrella. Been on hydroxychloroquine for about 12/14 years. Up until 6 years ago, no symptoms at all so consultant took me of hydroxychloroquine. After three months I developed horrendous cutaneous rash. Conclusion was that meds had been masking lupus symptoms. Back on meds and nothing for 6 years and then wham! Massive breakout on every part of body apart from face, hands and feet. Two biopsies taken and they’ve confirmed probably Cutanious Lupus and are suggesting sun exposure has caused it. Why? I ask myself after 6 years! I’m seeing Rheumatology in a couple of weeks and wondered what questions to ask! I was treated with oral steroids for a week and then topical steroids (Dermovate) Regime was 2 weeks twice a day, 2 weeks once a day and then two weeks every other day. Skin now clear. Any advice would be appreciated.