LUPUS UK
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Skin problems

Skin problems

Hi Guys

Sorry I havent been online for ages. We have been having problems at home for the past 12 months.

I am hoping one of you guys might be able to help or advise if possible. I have SLE, but need to ask. Does anyone here have SLE aswell as Discoid? If so how did you find out you have discoid?

I have been having significant problems with the skin on my face for the past month. This happens about twice a year, but usually not this bad! I keep breaking out with tiny blisters that turn in to lesions that look scaley, dry can be itchy as well as sore. They are making my life miserable. It is definately not an allergic reaction as there have been no changes in anything. Accept extreme stress levels 😔.

They are really hard to cover (I am not a big makeup wearer, but it is not worth the stares 😢). It is really affecting my already lack of confidence and my mood.

It doesnt just happen on my face, my neck and shoulders can be affected.

I have tried everything and anything I can think of to help it, but to no avail.

I was going to write a letter to my GP regarding it as it is impossible to get an appointment. Plus I dont want to make a fuss. I dont know if I should be speaking to Rheumatology about it aswell. My mum says I should request a referral to Dermatology. But dont know what I should do?

I would be very grateful if any of you guys have any advice or help. Sorry to trouble you all.

Lupie hugs to all

Esky xx

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Yes. Hi esky. I have had blisters on my scalp, feet shoulders. I have lupus and the doctor I go to thinks it is connected, but I have never been told I have discoid, so am not sure. Really think you should see a dermatologist and hopefully they will help. It always takes along time for me to get rid of this. They Gave me an antibiotic cream and antibiotic pills. Hopefully you will get the help you need soon. Hang in there and God bless you.

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Thank you nanno. Its awful. Its making me feel worse than i already do. Thank you for your advice. God bless. Take care xx

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This is a wonderful group, let me know how you are doing. Take care. I think derm will help. I really appreciate your reply

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Thank you will keep you updated thank u xx

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Hi there. I’m having the same problem after a long spell of flare up (I have Sjögren’s rather than Lupus) and I think it might be Rosacea with me - which can be a common extra with Lupus and Sjögren’s I believe. I have it on my neck too and sometimes isolated blisters on my arms. It would definitely be a good idea to write to your GP and attach some photos I would say. Then they will hopefully make an appointment for you to see a dermatologist.

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Thank u. Its driving me insane. Nothing I am using is working. Its upsetting. Thank u so much for your reply xx

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Hello esky, these rashes are miserable. I’m glad your mum is by your side helping you figure out what to do about this

I hope you are taking photos of these rashes for your personal records so you can show these to any medics you see about this from GP, to rheumy to dermy. Yes, definitely do make sure your GP & rheumatologist know about these rashes. And ask them both whether you’d do best to be referred to dermatology.

I’m 64 and have been getting several types of lupus-related rashes all my life, on my face and elswehere. So far Dermatology hasn’t helped me much with my various types of rashes. My GP & rheumy have helped most.

i do get rashes that seem to me to be similar to those you’re describing. My medics & i have figured out how to treat these via years of trial & error with various topical meds. ultimately we’ve found that “combined therapy topical treatment” helps me most: prescription steroid + fungicide + antibiotic ointments. Mostly i tend to need to apply all 3 types of ointment because my version of immune dysfunction includes a type of immunodeficiency that isn’t due to my oral immunosuppression meds. This immunodeficiency means any rash i get attracts both fungal & bacterial infection. So this means i usually need the prescription antifungal + antibiotic topicals & i also need the steroid topical to treat the lupus aspect of my rash.

I do know other lupus patients, though, who haven’t got my immunodeficiency and still do need this 3 part combined therapy topical treatment.

I should add that now rheumatology has got my daily oral combined therapy lupus meds right, i’m mostly getting less of these sort of rashes...so may be a good idea to ask your rheumy whether your oral meds are sufficiently damping down your version of lupus

Hope something in there helps. Please let us know how you get on

😘🍀😘🍀😘🍀 coco

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Thank you. I will keep you updated. Just need to see our phantom doctors now 😂. Thank u xx

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Have you thought about posting some photos? Would it be easier to identify?

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Some photos

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Wont let me add more than one photo 😔. Its like that but all over my face. Red angry and crusth at min 😔xx

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You poor thing: looks very sore! And i know how hard it is to have ths kind of thing on the face...xoxo

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Thank u its awful. Spoke to doctors should be able to get some help today fingers crossed. Wish me luck. Thank u xx

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Yaaaay!!!!!!🤞🍀🤞🍀😘

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Thank u. Its horrid 😢. Xoxo

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Yes, that does look painful. :(

I'm getting some facial rash my face since Spring arrived. I know I "should" be using the sun protection cream.

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I use Ultrasun which is good, but can be pricey. My gp prescriped Sunsense - it is really good. It definately helps me. The sun causes me way too many problems. Had to fight the gp for it, but it was worth it. Try them u never know hun. Thank u xx

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They all tend to be quite expensive, as I find. They tend to be left unused...I applied it today, thank you for sharing. :)

It amazes me, suddenly we are getting skin-related posts as soon as March/April arrived. The sunshine doesn't seem very strong, but still, it is strong enough to cause some damage to our Lupie skin. Hope you get better soon.

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Thank u xx

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xx :)

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Doctor has given me Betnovate and says if no better in a few days. Referral to Dermatology and stronger steroid cream. Fingers crossed. Hopefully will get somewhere. She definately thinks its lupus related. Thank you all for your help and advice. Means alot.

Lupie hugs to all xx

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Great! Well done! Thanks for this update!

I’ve got the topical steroid betnovate on repeat prescrips & use it as the first line treatment for pretty much every type of rash i get...i am given the ointment version cause i’m badly reactive to something in the carrier of the cream version. Sometimes it turns out i need a stronger steroid ointment, so i also have dermovate on repeat prescription. Sometimes we realise i need to combine a topical fungicide or antibiotic too. Occasionally oral antibiotics...your GP is on the ball...hopefully your dermy will be too

Looking firward to learning hos you get in with betnovate 😘🍀😘🍀😘🍀

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Thank you. Im hoping it works. My doc advised to give it a few days and to let them know how I get on. I have my fingers crossed it works. Thank u Barnclown. Will let u know how I go. Lupie hugs xx

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I love your gp’s attitude! 🤞🤞🤞🤞

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Hello my lovely,

I haven't posted for ages as I'm silly busy with getting the business going ...i do read everyone's posts and keep up to date but I had to answer yours! My skin hates me - I have been diagnosed with UCTD, hEDS, query sticky blood,etc...and dermo-graphism and rosacea. My face has the same red spots that are itchy and sore with no puss (sorry to be graphic) but are like big chicken pox. I saw a dermo who prescribed soolantra ointment (which is ivermectin which I get off my car to put on my chicken for mites!!!) and antibiotics and that works as long as I'm taking it. My darling B doesn't get how excruciating it is because people stare and, in my eyes, think you're dirty. I wear make up everyay now just to feel ok. I can only use Bare minerals but it's sooo expensive. I feel your pain - it's like your whole body hates you and it's another ruddy thing to add to everything else so get a dermy referral sooner rather than later and let us know how you get on.

C xx

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Hi Charliebear68

Thank you so much for you reply. I was told last year that i had seronegative APS. I thought great another to add to the list 😂. Know exactly what you mean about bare minerals soooo expensive. I use bare minerals, laura geller and ybf. My house sometimes looks like the Boots cosmetic counter 😂. Mineral veil seems to be my best friend at the minute. Can only use OPI on my nails too. Sure lupus wants to bankrupt me 😢.

I only buy my "body essentials" as I call them from QVC when they are on special offer or easy pay. Makes it more affordable.

I feel gross at the mo. I think my bodys like I hate you, all the tablets you feed into me you can have some grief back 😂. Hopedully will get somewhere with the Dermovate. Crossing my fingers. Will keep you updated hun. Thank you for your help. Take care.

Lupie hugs

Esky xx

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Car should have read vet!

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my mom went to a skin specialist(dermatologist) who took a small biopsy and the diagnosis was Discoid lupus. You are on the right track. You are not making a fuss. You are being your own advocate. It looks very similar and the dermatologist was very helpful.

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Hi Sconan

Thank you for your reply. I am definately going to ask for a Dermy referral. As it seems this keeps happening. But each time it is worse. Hope your mom is okay hun. Thank uou for your advice. Take care.

Lupie hugs

Esky xx

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I found out through a skin biopsy of my rash...at first my Reumy thought Discoid..then it was changed to Subucate(sp?) cutaneous Lupus.....mostly chest shoulders upper back..some around my ears neck outer face(jawline) and some scalp......Anyhow, if you could get a bipsy while your rash is active, you would be able to find your answer..My Best...and sorry for you last year of home stress

leslie

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Hi Leslieliesel

Thank you for your reply. My gp was thrown when i uncovered my face. Bless her she said she was no expert but that definately looks like the lupus fighting back. She had been looking into it before I got there. With any luck I will have some relief, fingers crossed. Just feel like I want to borrow a balaclava at the min 😭😂. Will let u know hun. Thank u so much for your reply. Take carw.

Lupie hugs xx

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xo...I' will be looking for your outcome/results of your rash..

xx

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