Hi everyone, I have had skin biopsy and been told I have cutaneous lupus. Its on my chest and seem to still be active - its covering about four times the area it was when the biopsy was done. If I am stressed or hot the rash comes up on my face too.
I am very self conscious about it - along with advice about the sun I chucked out every item of clothing that doesnt come up to my neck!! Good news is that I did already have a rash vest so this week have gone back to swimming - only one in the pool covered up but SO glad to be there and its really helped the joints.
I was diagnosed via community dermatology - seems to be no follow up and little advice, so folks all hints and tips gratefully received
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girlinatent
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Hey there - so sorry to hear your news. I am sure you'll get a lot of support from the wonderful people on this hub, however I don't have this diagnosis but I do have rashes from time to time that look like the images on the internet. I used to get them a lot when I was younger - and covered from head to foot when very young ie 0- 6. I was wondering if you wouldn't mind posting a photo of your rashes? I hope you don't mind me asking. If you do a reply you can add it to the reply by pressing the icon of a box with what looks like mountains and a sun just below the text box. Not to worry if you'd rather not, of course, as you have said it is very upsetting for you to have these rashes. I totally understand. When I was very young parents and carers would keep their children away from me as it was so obvious. Can't blame them of course, as they didn't understand - and certainly neither did my parents as father was completely anti orthodox medicine so not doctors saw it.
Can you ask the team to give you the follow up and support you need to manage it? Awful that they've not done that if you don't mind me saying. The Lupus UK website will have lots of information on it... I've just had a look for you. Under the heading "What is Lupus?" there is a section in the drop down menu called "publications" - one of them is Lupus and the Skin and Hair which might help. There is also one for Lupus nd Light Sensitivity. The things I do to keep my rashes down are:
1. Never use any fragranced products especially washing detergents - I only use Boots for Sensitive Skin or Ecover unfragranced - and never powder, always liquid as it dissolves so much better,
2. I always do an extra rinse cycle on the washing machine and make sure there are no remnants of detergent in the drawer and do a hot 90 deg wash with nothing in it but soda crystals once a month to clear any nasties. I had a terrible time once with a new washing machine that didn't rinse at all and I was effectively wearing detergent - covered in rashes head to foot until it went wrong early on and the washing machine repair guy told me new washing machines don't rinse like the old ones and I made the connection. He said this is why young kids get eczema etc.
3. I only wear natural fibres - so my skin can breathe and doesn't get irritated. Sleep naked too to allow the skin to breathe at night!
4. I keep out of the sun and wear non fragranced factor 50 if do go out, with a hat and sunnies
5. I don't eat any kind of fast food and food with nasties in such as MSG or chemicals
6. I eat a very clean diet full of fruit and veg (on the FODMAP list however as otherwise my guts kill me!) and wholegrain (never white rice, flour, sugar etc) products, totally limit sugar but allow a couple of teaspoons of Demerara in my earl gray tea, no coffee, not too much dairy, lots of oily fish, lean meats, seeds etc.
7. Take high vitamin C, b complex, magnesium, calcium, Zinc (good for skin!), fish etc oils (EPA's and EPO's), and all my meds from rheumatology etc on regular basis,
8. As my skin is flaky and dry as hell - Eucerin UreaRepair PLUS body lotion (get on prescription) ,
9. natural soap and fragrance free body wash
10. wear gloves always when doing washing up
11. Make sure I drink 2.5 litres of water a day - if not more... essential as I have Sjogrens in al it's glory. So important to hydrate every part of you - including the skin and flush out any nasties in your body - and keep you regular.
12. Make sure I am regular! I have to take meds for that as been a problem since 7yrs old - even with the healthiest, roughagey diet ever.
I have same diagnosis. On my chest too. Also have face rashes. I was also diagnosed a couple of years ago biopsy. I was referred the hospital team as they can prescribe meds.
I wear factor 50 every day. Boots do a really good face moisturizer that is factor 50. I prefer this for my face and use regular sun cream for rest of body. The key is to make sure you use these everyday and are regularly taking vitamin d. You will no longer get this with all the sun protection. Lack of vit D will make you feel rubbish and cause pain. I learned the hard way.!
I take hydroxy which was prescribed by the derma and have an ivermectin cream for face flares.
I stopped exercising because I felt so rubbish to start with but now I’m better I am exercising and swimming regularly and it’s really helping.
Hi girlinatent 🤗love the name!! 😹Welcome to the forum!! 💐
I was diagnosed with cutaneous lupus in 2017 via blood results.
The first drug that is usually prescribed is called Hydroxychloroquine..it's an anti malarial drug that helps to modulate the immune system. Did your dermy start you on any medication?
I'm on lots of drugs now n won't bore you with telling it all..but happy to answer any questions you have.
Being UV sensitive is a big issue for me..I have to cover up whatever the weather..wide brimmed hat..long sleeves..trousers etc. It's not just outside light either with me..I react badly to flourescent lighting in supermarkets, hospitals..everywhere really!! 😹🤠😎
On the lupus UK website..you can scroll down to the part that says Eclipse...there you will find out about photosensitivity.
Also DermnetNZ is a wonderful site with loads of pictures of rashes..you can match your rash n discover about possible treatments.
Topically I use Dermol 500 lotion..I get it on prescription as a soap substitute n moisturiser. I also have different strength steroid ointments that I use on lesions (very sparingly n only on affected skin)
If the rash is itchy I take piriton (antihistamine)
This forum is fabulous!! I've learnt more about lupus here than from any of my doctor's!! You've come to the right place.. you're not alone!! 💜🌈😽😽Xx
I have added below a link to our publication regarding skin involvement in lupus, as well as links to some blog articles which I hope you will find helpful. One of the links contains information in relation to getting the most out of medical appointments, as well as advice relating to changing your doctor or obtaining a second opinion.
I would advise that you speak to your GP and make sure that they are aware of the diagnosis and they should be able to advise in relation to next steps and onward referral.
I hope the above is helpful, but if I can help further, do please let me know.
I just wanted to add that if you been diagnosed, that should have at least started you on hydroxychlorquine to calm the rash down & hopefully any other symptoms you may not realise (yet) are related....
My rash to start with just kept spreading even with no UV exposure & it took a few months with hydroxy which helped...
Take pictures to document, really helps if any overlapping symptoms/ diseases pop up as mine did. Look out for sjogrens as cutaneous lupus can go hand & hand with it.... My is subsecute cutaneous/sjogrens, etc etc
Hi KK Glad at last a diagnosis ! So your challenge is what is lupus, what is sjogrens & the possibility of more meds to help ☺.... Hope they take it seriously.
Been a really long & slow recovery with a few flares to wear me down... Probably typical for us....slow recovery...ta ml 😁
thanks Maggie - yes totally brilliant. I will be well armed when I eventually get an appointment - and will all the great tips well on the way to recognising and managing my symptoms
thanks Tiggywoos - I must confess that I haven't really thought about food triggers but I know that when I went gluten free I stopped snoring almost overnight!!!
With regards to the itching might be worth having a think about “histamine producing foods “ . I used to eat avocado 🥑 and spinach and loads of blue berries but apparently they can be bad for urticaria so might be worth keeping eye on that . Smelly cheese and olives too !
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