Subacute lupus skin rash : Has anyone had severe... - LUPUS UK


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Subacute lupus skin rash

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Has anyone had severe lupus skin rash and it’s cleared? How long did it take ? 😭

18 Replies

Hi Jax 🤗Welcome to the group 💐The answer to your question is yes I have had bad all over rashes that have cleared. Unfortunately it took a long time n I'm on a lot of medication. I was diagnosed with Subacute Cutaneous Lupus (SCLE) in 2017. Am happy to help in any way I can. Are you on any meds? Have u seen a dermatologist? 💜🌈😽😽Xx

Thanks for the reply, I have been put on predisilone 30mg for 7 days then tapering down each week by 5mg , I’m only on day 6. And I have elochon ointment too, it’s very greasy. I look terrible. Like Somone has thrown acid all over me- face neck arms legs back and chest. But I will say since the medication the pain has gone!!!! And I’m not burining up now. Does anyone know - Will I be able to get tatoos in the future? I have a holiday booked to Jamaica in October I’m thinking of cancelling as I’m scared now of the sun.

Also family holiday in Mexico in February 😭 how can this be a thing !!! 😭😭😭 xxx

Is this rash caused by the sun? UV sensitivity is a real thing n I agree it sucks n I've found it one of the hardest things to deal with.I'm glad to hear that the Pred is working it's magic n you're starting to see some improvement. As to your other questions..I can't answer them coz as u probably know all is lupies are unique so my experiences won't be the same as yours..we look for similarities.

If u go to lupus UK n scroll down to Eclipse you'll find out all about photosensitivity. I'm photosensitive n I have to cover up all year round..I use UV protected clothing as I can't tolerate sunscreen on my skin. Wide brimmed hat n sunglasses..long sleeve tops n trousers are a must..I have to wear gloves too n keep my feet covered. Don't forget to protect lips too. 💜🌈😽😽Xx

I was using tanning bed for about a month 12 mins a week as I had a small pink mark on my arm for about a year that was itchy and Somone said it may be excma and tanning beds help - then I started to get lots of small itchy spots all over - and thought maybe allergy to something- then boom sore rashes everywhere and hands too it’s been the worst time of my life…. I’m scared to go outside feel my life is ruined….this website is helping me though …..and yes I will check that one out you recommend thanks xxxxx

Oh I see..have u seen a dematologist? That itchy pink patch that u had initially should be looked at I think. Who prescribed the Pred? 💜🌈😽😽Xx

Yes private dermatologist prescribed pred and olochon wish I found him last year…. Took a skin biopsy too so hoping to hear back on Thursday when he takes stitches out. I need to write a list of questions for him lol 😂

Ah good stuff 👍The biopsy will help him/her to get a clearer picture of what's going on for u. Yes definitely write questions down..leave a space underneath for the replies n take a pen with u!!

Keeping a symptom diary is good to so that u can record everything..note it down if it's weird even it seems irrelevant..u may start to notice what might trigger a flare. Xx

Mine took about 6 months to clear with dermovate and elecon from dermatologist but even now I still have some on my shoulder and back. Can only use the cream for 3 weeks as it’s quite strong. Just try to control it every so often, I keep my shoulders covered and wear high factor sun cream. It’s a real nuisance.

Thx, Have you been able to go on holiday and not suffer ?? So depressed about this, I love sun!!! 😭😭😭😭😭 or loved!

I’m in Turkey just now, I keep covered, wear a big hat and wear Ultrasun factor 50. There are some days, I just want to sleep but I usually have a nap in afternoon and have managed quite well. I’ve been wearing fake tan to take the white look away from me as I’m very pale skinned. Just a tad annoying when everyone around you is trying to get a good tan and I’m in the shade. I enjoy evenings as I can sit outside, have a meal and look normal. I wouldn’t put off going on holiday, it’s just a matter of adjusting. Best wishes

Ah happy holiday hope ur having fun!!! Do you go in the pool/ sea? Do u wear long sleeve swimwear / swim leggings? I really don’t want to pictire myself in a scuba diving style swimsuit lol

I don’t go in swimming, I just keep covered unfortunately, frightened the water will make me worse. I stay out the sun mostly all day, I’m like a vampire, come to life at night lol. You can still have a good time xx

So sorry to hear you are uncomfortable I have a diagnosis of SCLE. I was covered from head to toe with a rash when I was diagnosed around the same time as you. I had all sorts of creams but nothing really helped perhaps partly because there was so much of me that needed to be treated. I know hydroxychloroquine has helped but it took a few months to kick in. The only way I can keep rash free is to completely cover up when I go out or sit in a car, I avoid windows and some indoor lights. It is an absolute pain and I look like a mad lady when everyone else has summer clothes on. But it works most of the time and my friends are wonderful. I have found Australian clothes such a gloves, hats and neck coverings really comfortable and effective. I also always wear socks as a rash on my ankles drives me crazy. I hope some of this works for you and you have my sympathy and good wishes.

So sorry to hear you have a Lupus rash. It will clear but may take a while. Key to recovery is finding what works. Make sure you do see a Dermatologist. I had severe face, neck, arms and upper torso rash in 2018. Broken, crusty, weeping, red sores that barely responded to various steroid creams. The strongest ointment made my skin sore so stopped using it. The magic treatment was Prednisolone at 30mg per day prescribed by Dermatologist. Try to get treatment promptly or it may worsen quickly. Whole episode from early signs back to reasonable appearance of skin was around 6 months although I still have some scarring and redness under skin. I had previously had minor sores on skin but that year the flare went into overdrive. I now use Spf 50 foundation made by “It Cosmetics “ to screen my skin from sun all the time. By the way, my daughter was born 32 years ago with neonatal Lupus and had same skin rash in her first year on any area of her body exposed to skin! That info for any younger female sufferers who may be pregnant or planning pregnancy. It wasn’t nice but did clear eventually.

Best of luck with treating your rash. x

On predisilone now for 6 weeks (only on day 6) 😭 pains gone but skin looks vile I can’t look at myself, have elochon ointment too! Can I ask have you been on holiday with this problem? I’m terrified I have a holiday to Jamaica in October…. Do dermatologist give people things to take for whiles in hot country? Will 100 factor sunscreen work…. I’m 34 and feel my life’s over - holidays was the only thing I had to look forward to now even that is being took away from me 😭

Wow, a holiday in Jamaica sounds fab. I spent 3 months in Australia in 2019 the year after my unprecedented rash (6 months after rash had more or less cleared) and was careful to wear factor 50 Spf each day on exposed areas and appropriate clothing. I have sun screen prescribed by Dermatologist.

I wore hats with wide brims, lots of linen with long sleeves, trousers or good length dresses. I avoided sun when I could and if outside looked for shade. My skin wasn’t perfect and was red and raised in places but it mostly behaved well.

I was still taking Prednisolone at a dosage of 15mg per day, along with hydroxychloroqine and methotrexate to control my immune response to the sunshine. I saw my dermatologist and rheumatologist along with my GP before I went and discussed how I would deal with any problems and also took out expensive insurance just in case.

I was clear that I WAS going on holiday and just needed to prepare. So my advice is to do the same. Do everything you can to mitigate any adverse reaction and be proactive in limiting your daily exposure to the Caribbean sunshine so that you can have a good holiday. I hope you have a fabulous time when your holiday comes round x

Ah thanks for replying, you have made me feel there is Hope still for a holiday! Did you go in the sea/pool at all? Was you completely covered up in the water?

Yes, I did swim in the sea water pools they have in Australia on the beach. The pools drain slowly at low tide and refill with fresh water at high tide! I think that, because the rash is really coming from the connective tissue under the skin which is what’s inflamed, the water shouldn’t be a problem. If you have broken skin I’d suggest being a bit careful. Remember to re-apply sun screen after, cover your skin and sit in the shade. Keep trying to stop that over reaction from sunlight on your skin.

Hope this helps.

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