I’ve not long been diagnosed with skin lupus, but if there is any UV (even when it’s raining), I get a flare up.

[Teanna]

I was diagnosed with skin lupus but I have it so severe, is it normal to get flare ups even when the UV Ray is only 1? It looks like I have red eye shadow, my ears are red and scaly, if it gets higher than 5 UV, I have to stay in. I’ve been told to get the UV film up on my windows. I have 4 types of creams to put on 2/3 times daily. My routine moisture etc that I used to use, plus make up, his there anything I can use? I’ve heard of the camouflage make up, does anyone use this? Although my mum has skin lupus, she just uses sun screen. Please any tips ???

[Hidden]

Teanna, that is so awful! I live in Southern California and have spent my Springs and Summers at the beach. I even lived on the beach for three years as a young adult (oh, those were the days). The sun was the last of the things I had to give up because of this darn disease! Even with an SPF of 70, applied properly before sun exposure, and sitting under a shade umbrella, after 2 hours I’m sick! I hate it!!

Bottomline is, I feel for you. I know your pain and frustration. After giving up every beloved food, daily exhaustion that destroys your quality of life, and now, no sun!!! And you sound like you have it much worse because it’s the skin lupus! BUT... I’m sure that your creams and such will kick in? What type of creams do they have you using? My neck got so inflamed, red, swollen, sore and itchy. The cream I’m on knocked it out (after a couple of weeks) and now when I feel a skin flare, a few uses and I’m back to normal. I have to use it sparingly as it says it causes skin thinning.

How long have you been using the cream?

Teanna, I am so very sorry. I hope things clear up for you very soon. I hope that someone, doctors or people on this site, someone, will know just what it is you need and will have your answer for you.

All my best to you.

BK

[Teanna in reply to Hidden]

Thank you, all the best to you!!

[Hidden in reply to Teanna]

🙏

[Krazykat26]

Hi Teanna

I can totally relate to what you're saying..I have SCLE..ie skin lupus n I have to be extremely careful with all kinds of light..UV..LED..n florescent lighting too!!

I have found the lupusuk site helpful in this regard..there's a link to eclipse..that's all about light sensitivity.

I have UV film on my windows n it does help.

I've found that I have to take the same precautions all year round..such as wearing a hat at all times..indoors at hospitals n outside definitely..I have glasses with transition lenses but u may have to wear sunglasses too..stay covered with long sleeves n trousers. I recently bought a UV brolly which is worth every penny..protecting me in the sunshine n the rain ☔

And wear sunscreen on exposed parts..face ears n don't forget those lips ..if your skin reacts to heavy sunscreens I've found a mineral based one which is easily absorbed by my problem skin..it's called Sunsense n they do a lip balm too..expensive but a little goes a long way!!

Hopefully as time goes on u will begin to understand how lupus affects u personally..this is how it's been for me anyway xx

[Teanna in reply to Krazykat26]

Hi, I was told I had it back in April, I was put on steroid creams, one for the face and one for the body. I was told to cover up and use a hat (which I hated). My old carer (whom I got rid of), used to stick me in the garden, fully clothed even a thick dressing gown, and I burnt right through anything. Then by the August I was so bad that I was admitted, I can’t remember the exact name, but the first word began with C (which I knew it was the skin) then Lupus followed by 2 other names, the last beginning with E.

I also suffered with Liver failure, so at that time they though it could be SLE lupus, luckily enough it was not. I was also diagnosed with osteoporosis, and facial oedema, all in one hit. I was a mess. Back to the creams, they tried several, i now wash with Dermol cream, then apply one steroid cream to the face, one for the body and one for the back. After that I use a moisturiser for all over. But the facial one especially, nothing seems to work. They told me to cover every window with a UV protecter, it’s dark enough in my house with the trees etc, but if light gets through, I do suffer.

I used to really look after my skin, (I put it down to the genes), I used to go abroad a lot, now if there is any UV, I can’t go out. I’m also taking steroid tablets, but it’s not helping at all. So even if there is any homemade remedies etc, I’m willing to try.

Thank you for your advice and I will look into it all.

Hope you are well. ?

Teanna

[Krazykat26 in reply to Teanna]

Does Subacute Cutaneous Lupus Erythematosus sound familiar? SCLE for short?

I had a big problem with wearing hats but once I got into it..the benefits far outweigh the drawbacks.

UV film will only filter out the UV rays..u will still be able to see through n enjoy the trees etc in your garden..it's just like looking through weak sunglasses.

It does sound like it's important that u protect your face n ears.

I'm unable to wash with anything other than Dermol lotion n I use it to moisturise too..do u have rashes anywhere else? Mine breaks out anywhere n everywhere...EXCEPT for my face!! 🤞So far I've not had to deal with that problem 🤞

Im on steroids orally n I have two steroid ointments that I use depending on severity of any rashes..betnovate ointment is medium potency n dermovate ointment is stronger..big guns stuff!! Cream doesn't help..it has to be in ointment form for me. Xx

[Frosty1960 in reply to Krazykat26]

I am same but i get sunsence on prescription doesn't cost me at all. ❤

[Teanna in reply to Frosty1960]

Hi, yes I get the sunsence on prescription. I’m finding hard to get the UV umbrella, do you know were I can get it from? I also got the total sunblock glasses, I found these in a shop that caters for ski shop, but somehow the UV rays tend to beam downwards and I end up with red swollen eye lids, and were the glasses go around the ears, the top of the ears get burnt literally. Also the dreaded hat. I have tried a few hats, one had a big brim which was lined, but I ended up with a sore head, what should I look for?? My worse parts that I’m affected is my head, arms, back, and very scaly legs (all which are covered up. My daughter found a canopy which would cover my back door and window and can be attached and comes out and reaches the back wall which was painted a light almond, (it was all bricks and made my garden so dim). I don’t know if the light of the wall plays apart of my flare ups, so I have not yet brought it as it’s quite a bit of money, then I have to pay someone to fit it. Is lupus genetic? Although my mum has it but she only has it slightly, plus she can wear make up. I’m trying to find something similar plus I always used to use a serum, on my neck, face, then a moisturiser. So can you use this creams after putting on the steroid creams etc over the top?

It’s so hard when you have always looked after my skin, no lines, wrinkles etc and I’ve just turned 60yrs, I’ve now st

[Teanna]

Thank you very much for your advice. I also use dermovate BD all I’ve except for my back I use Nerisone Forte oily cream, and Diprobase all over. I do wear a hat and wear sunglasses, plus the sunscreen, but I still get red and blistered. I’m due back to see the specialist in a couple of weeks, so I’ll see what they can come up with. I miss the outside world.

Again thank you for yr advice.

I wish you all the best.

Teanna

[Krazykat26 in reply to Teanna]

I found Diprobase too heavy for my skin so I stick with Dermol lotion..I'm sorry I don't wear moisturiser or make up so can't help there!!

However I can tell u that I got my UV umbrella from Amazon..I just typed in UV protected umbrellas n it came up with all kinds..u can get a parasol which only protects in sunshine but I decided to go for one that's got two layers so it protects from UV n keeps me dry when it's raining. Mine cost about £15.

Hats..there r literally loads to choose from n I have got a small collection now for all kinds of weather..I do like the bucket hat.. they're cloth n have a good sized brim..they're soft n fold up to pop in my handbag when Im not wearing it.

It's true that UV light does reflect off of different sources..mainly water n snow but u may be right about your garden wall reflecting the UV!!

It's tough not being able to go out..I understand because it's the same for me..but I have come to accept that if I do risk it..I suffer the consequences!! Even though I take all the precautions I can't remember being rash free for years..I've always got skin playing up somewhere on my bod!! However I do go out in the evening n have a sit in my garden when weather permits..with all the kit on of course..I have a couple of good sized trees in my garden n I stay in the shade at all times.

It's good that you've got an appt in a couple of weeks..I always take pics of rashes to show my dermy just in case they disappear before the appt..n I keep a diary of symptoms in order to get the most from the appt..note down any questions etc beforehand helps me to focus on the most important bits!!

Hope this helps xx

[Teanna in reply to Krazykat26]

Yes it does help, so thank you for yr advice, I shall look in Amazon, I did look initially but could not find one, but I will look again.

Thank you for all your advice, much appreciated.

Teanna

[Krazykat26 in reply to Teanna]

You're very welcome 🤗 xx

[Paul_Howard Partner LUPUS UK]

Hi Teanna ,

We have an article about coping with light sensitivity on our website which you may find helpful - lupusuk.org.uk/coping-with-...

There is also a dedicated section of our site for advice about light sensitivity called Eclipse at lupusuk.org.uk/eclipse/

[Teanna]

Hi Paul, thank you for your information. I will certainly look at the site as I could not get the link from here and I’ve been unwell to actually get onto the site. I’m very surprised that even with it being dull and raining I’m still somehow getting rashes on my face. All the creams etc are not helping, if anything, especially on my face, is the worse. Before having Lupus I never ever had a spot, (I think it’s genetic), although my mum has lupus, she still has a beautiful complexion, all she uses is her normal cream and a sun screen. So from having a completely clear complexion, to be full of big rashes. I did have an allergy test about 10Yrs ago & it was over a 3day test, and 99% was different types of chemicals etc. So I’m wondering if the some ingredients are in the actual creams? I shall ask the dermatologist (in 2 wks time) if they have checked as it was quite a while ago and the consultant then has left.

So I will be definitely looking at yr site you sent me.

Thank you

Teanna