Has anyone had a rash like this??: Oh, I found how... - LUPUS UK

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Has anyone had a rash like this??

leslieliesel profile image
25 Replies

Oh, I found how to post photos..Thanks you lisalou...

kind of blurry, but this rash was lead me to my lupus DX...I had it biopsied..along with Blood work. That was the end of summer 2017.....other possible dx's were considered ...psoriasis..Dermatamyositis...lichen planus..hives...discoid lupus.. and now the DX is subucate(sp?) Lupus according to being tested for all I could be tested for..

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leslieliesel profile image
leslieliesel
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25 Replies
Paloma25 profile image
Paloma25

The first time I had a reaction to sun exposure, the rash looked like that, only it was on my legs and arms. (I had gone from gloomy upstate New York in February to the sunny Caribbean for our honeymoon.)I now use sunscreen every day.

leslieliesel profile image
leslieliesel in reply toPaloma25

Oh Dear...on your Honeymoon....I live on Cape Cod (Ma usa)..my husband and I went to Florida a couple of weeks back...I did my VERY best to cover up but still My forehead and hands are messy now....

onamission profile image
onamission

I have had the same rash on my arms even more so when they were exposed to the sun

leslieliesel profile image
leslieliesel in reply toonamission

Oh My....we just can't go outside without covering up anymore...how long have you been getting the sun reaction??

onamission profile image
onamission in reply toleslieliesel

About 8 years I did see a consultant he said it wasn't lupus it was because I had COPD and I took steroids my GP shook his head in disbelieve when he read his letter

leslieliesel profile image
leslieliesel in reply toonamission

Good Grief!!!!!!

onamission profile image
onamission in reply toleslieliesel

I have just started with problems with my liver my COPD is part to do with smoking but I'm convinced this is a autoimmune problem so I'm going to go private the consultant I saw a few years ago doesn't work at this hospital

Rach459 profile image
Rach459

I too get this rash on my arms, chest, face and back when im exposed to the sun even when im wearing factor 50! I have been told i need to be using total sunblock now

leslieliesel profile image
leslieliesel in reply toRach459

Yes same here..my Rheumy said SPF 100 block, and UPF clothes....

EOLHPC profile image
EOLHPC

Am so glad you’re convincingly diagnosed! Yes...i get something v similar: neck, chest, arms, legs, feet...horrible...mine comes in reaction to both light (especially sunlight) and heat...

leslieliesel profile image
leslieliesel in reply toEOLHPC

it really IS horrible...

maggielee profile image
maggielee

Hi though I can't see the specific pattern of your rash, it does look like the rash I had, which started on face, neck, chest then arms & untreated spread despite covering up. I was biopsied & was diagnosed with subsecute cutaneous lupus. I also had achy legs & flu like symptoms.

I now take hydroxychloquine which was beneficial along with avoiding UV as much as possible including hats & gloves (especially when driving)... I also was diagnosed with sjogrens which sometimes goes hand in hand with SCLE and which is difficult to medicate & takes a while to manifest... So good news & not so good news for me... Miss the sun terribly as like you I live on the coast of Wales near the sea. I am trying to figure if I dare go back in the sea with a full wetsuit, just need to think of my head 😎 & reflective water.....

Gosh don't mean to be doom & gloom and hope you get a clear diagnoses. They don't always look for more than one autoimmune illness unless they know their field very well.... ML

leslieliesel profile image
leslieliesel in reply tomaggielee

I am the same as you, same symptoms..and yes I was a real beach bum in my youth, and still am in my heart!!I At least I live in North East USA..Cape Cod MA so our summer season is short.. do not believe I have sjogrens..my husband does ...I also take Hydroxy...

Sarahjj87 profile image
Sarahjj87

Yes when I was first diagnosed with lupus my rash was just like that. Everywhere I had been exposed to the sun on holiday

Hope it clears up soon

Sarah

Loopy-Claire profile image
Loopy-Claire

Yip, mine also started like that, along with aches and pains. Doctor was prescribing pain meds when I presented myself and had rash...straight to dermatologist where biopsy was done.

Now...I sent email to dermatologist asking for report to take with me to Australia as Im leaving South Africa in Sept...he phoned and said he cant give me report as his findings are the start of Lupus/connective tissue disease, not full blown yet!!! I queried saying I will have to go through same again in Aus. His reply...my doctor should believe what I say!!!!!!

We all know that doctors find it difficult to believe us, the pain, the brain fog etc. Should I ask my GP to ask for results or at least chat to dermy? Why do they hesitate to give results or suspected findings? Its not like these chaps are next door and will feel an idiot if nothing flares again! Cannot understand!

Anyone else have a problem getting facts or results from their dermatologist?

Also, if I may hijack this space...palpitations are severe lately..any ideas lurking in this forum?

Thanks to all of you.

Take care xx

leslieliesel profile image
leslieliesel in reply toLoopy-Claire

Same here..RASH aches and FATIGUE!!...It is very easy to get my lab reports..sorry you are having trouble with that...gee, I do not understand why(the Dr) make this harder than it already is.. Heart palpitations are very unsettling..my daughter gets them(she doesn't have AI disease) I have not had them..

Lisalou19 profile image
Lisalou19

Oh my you poor lady, do you get any sensation with it? Like burning or itching

My rash never looks the same sometimes severe sometimes I can manage .

In the sun mine was loads worse but mainly my face and forehead 😔

leslieliesel profile image
leslieliesel

ITCHING..yet it burns to scratch... felt like bugs were crawling in my hair..

Curly1430 profile image
Curly1430 in reply toleslieliesel

Oh Leslie that look so angry and sore did doc give you any cream for it xxx

leslieliesel profile image
leslieliesel in reply toCurly1430

Yes topical steroids(didn't really work...and prednisone and Hydroxychoraquine....The photo was my rash of last summer that lead me to the drs then my DX..The rash was all but gone..then my husband and I went to Florida...I COVERED UP sunscreen and clothes..some of my rash came back anyhow....just a bit though..

Curly1430 profile image
Curly1430 in reply toleslieliesel

I got this big tub of mint smelling stuff I’ll need to see if wife can remember what it was called it was cold and took nip out of it only down side is you smell like mint humbug lol x

leslieliesel profile image
leslieliesel in reply toCurly1430

Is it like Vics Vapro Rub???

Curly1430 profile image
Curly1430 in reply toleslieliesel

No it’s a big tub of white stuff and it has mint in it xx

leslieliesel profile image
leslieliesel in reply toCurly1430

hmmmmm

Barbara17 profile image
Barbara17

Yes, I get this rash with the sun. Sometimes just big red lumps too. However if I use factor 50 every day and cover up, including a hat and sometimes a scarf too I can manage it. I do get some funny looks but that’s their problem! I’ve got enough of my own.

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