For Njbx

[Krazykat26]

Excuse my back ladies n gentlemen!! This is like some kind of wierd photoshoot!! 😹😹I've posted this up for Njbx so she can have a look..so of course.. you'll all see it!! 😔

Don't look at me...I'm shy!! 🤭🤦

Kat 😽😽 xx

[Njbx]

Aw thank you so much for doing this, how kind and brave of you. I appreciate it so much!! They do certainly look similar, it was also on my thighs, feet, arms, face, chest, stomach... Well everywhere. The Dr actually asked if I'd eaten something.

Now I have only ever been like this on holiday so extreme heat and a lot of sun! I don't tend to react so bad in the UK, I don't know if it's specific UV rays or if this is just the beginning and I will end up getting more sensitive to less strong rays.

I am completely unaware of what is going on at the min. Did you always get frequent rashes or did they and other symptoms slowly appear over a matter of years or months?

Thank you so much again!!xxxx 🥰

[Krazykat26 in reply to Njbx]

Awe thank u 🤗

I have constant rashes..if u look on my profile you'll see a post of my thighs recently..those things r pretty much the same now though not as itchy!! Rashes come up everywhere n then I get ulcers on soles of my feet n palms of my hands!!

I'm on all the meds n still after two years of treatment I am constantly trying to find some kind of control over it..n failing mainly!! 😹

I'm looked after by a wonderful dermy though n we're working together..but my skin oh my...there's sooo much of it..how people can say that the skin isn't a major organ r kidding surely!! Its what holds us together n keeps out infection..even a small cut is quickly repaired by the body's immune system..n boy don't we feel it!!

R u being seen by dermy...it will definitely be worth asking for a referral...there r all kinds of lotions n potions for the skin!!

I have found that I'm extremely light sensitive..my back is always covered but still I've got this!! It gets worse..this is it ok-ish..I'm not in pain with it currently but when it plays up I know it!! 😔😔

Before getting a diagnosis..I always covered up in the sun or stayed in shade so I wasn't a sun worshipper as I'm fair skinned ..now I'm even reacting to flourescent lighting..I had a major flare in Feb this year n we couldn't pinpoint the reason..untill I looked on lupusuk (eclipse page) n researched about light sensitivity in general.

I had recently moved into a bungalow that had a 5ft strip flourescent light!! Now I've got a lamp in there!! 🤦

So it's been something that's developed with my particular form of lupus!!

Funnily enough I don't get the Malar rash..from the neck up I look fine..but u definitely wouldn't wanna undress me!! 😹😹

I'm glad that this has helped u... you're not alone ok?

Kat 😽😽 xx

[NeuronerdDoaty]

I hate my lupus hives. I start itching in April and usually stop in October. No known allergens except mold; (yelling) which is everywhere! Sometimes no rash and sometimes angioedema. (USA spelling.) itch itch itch. It’s the worst part for me with this fun-loving (sarcasm) what am I supposed to learn from this fresh hell?

[Krazykat26 in reply to NeuronerdDoaty]

I totally get u there Doaty 🤗😔

Skin skin everywhere...sun sun everywhere..indoor lighting everywhere!!! It's like I've turned into some kind of vampire!! I'm only happy when it's night time..or raining!!

My skin flares all through the year n in so many different places..just as one bit shows signs of improvement I have other areas breaking down 🤦

I can honestly say that I'm not comfortable in this skin!!

I said to my friend recently.."I'm off to grease my skin..do u know if u were to take my skin off I'd probably make a decent sized rug..or I'd cover a couple of drums at least"..she responded with "or a decent sized boat" 😹😹😹

So now I refer to my daily skincare regime as "greasing the canoe"!! You've gotta laugh eh? 🤷

Kat 😽😽 xx

[NeuronerdDoaty in reply to Krazykat26]

😆😆. My husband said he hopes there arent dogs mallergic to human skin dander. I told him that was just too gross he had gone to far. Lol Excuse me while I leave to go grease my canoe

[maggielee]

Kk kinda looks like my subsecute cutaneous lupus & until I got autoimmune meds, once it was triggered it kept spreading... Triggered by UV light when I was driving all day ....

There is a new zealand skin site with different photo's...

I hide all the time which helped & cover up, slap on 50 factor...winter is now my favourite season & walking in the rain heaven....gone are my sun bathing days....time to embrace the darker season... 😉🌑☀...ml

[Krazykat26 in reply to maggielee]

Hi Maggie

Yes u n I have the same diagnosis!! SCLE is my main diagnosis too!!

I'm on all the meds..hydroxy, pred,n I started ciclosporine last year..dermy wants to increase ciclosporine but I've been reluctant because my BP is higher now than it's ever been (side effect of ciclosporine) 🤦🤷 so now I'm taking Amlodipine to try n get BP down before I increase the immunosuppressant!! Swings n roundabouts eh?

I'm a nightmare in the car!! I used to drive all the time n now I sit in the passenger seat..covered totally n hiding myself from the sun's rays!!

I find sunscreen too thick for my skin..until I found this site n discovered that mineral sunscreen is better..so I use sunsense now when I really have to!! I'm a hat n shades wearer all year round!! 🤠😎🧛

I have to use lotions n I'm on two different strengths of steroid ointments for topical use n I've got some steroid surgical tape to use on hands when my fingers crack!!

N the other wierd thing is that I seemed to have developed an allergic reaction to water!! 🤦

Thanks for the link.. I'll have a look n see

Kat 😽😽 xx

[maggielee]

Here is the site I mentioned about skin conditions....

dermnetnz.org/ ml

[Krazykat26 in reply to maggielee]

Thank u soooo much for that link Maggie 💐

Can I ask u a couple of questions?

What immunosuppressant r u on? R u on methotrexate? If so could u give me an idea on dosage please?

I'm currently on Ciclosporine n Amlodipine which is a calcium channel blocker..not a good combination from what I've read!! So am just wondering 🤔

Kat 😽😽 xx

[maggielee in reply to Krazykat26]

Hi Kat. Great minds, I find our variable meds interesting.......

I started with hydroxy 200mg x 2 x's per day for a couple of years which helped the rash.

But, I was getting much more fatigue (I am in almost year 5 with meds & diagnosis). I saw a lupus prof. in london (early on) who mention that I also had sjogrens & decided to see a sjogrens specialist who confirmed I had sjogrens & that often SCLE goes hand in hand with sjogrens. So I was also prescribed mycophenolate (cellcept) 500mg x 2 x's per day.

I also, take various other meds for bones, high blood pressure, cholesterol, ohhh also, started salgagen 5mg x 3per day for moisture production which is working well ....also ranitidine which is going to be change as of scare in usa & now EU countries, about possible serious side effects which is still being investigated....

Been getting more aching & tiredness more & more lately & I may check in with specialist about current meds levels....I go privately to sjogrens specialist...I haven't heard from rheumy since earlier this year...juggle, juggle.

Your meds are interesting, don't understand variety & how they are chosen? I know hydroxy is 1st..

Mycophenolate was ok for me. Don't know if they (docs) can prescribe more or varied with reducing white blood count.... So far I am lucky in regards that my system is tolerating these meds once over initial adjustments of side effects...

Good to share...see if mycophenolate would help, do you know if you have sjogrens?

ML. 😊

[Krazykat26 in reply to maggielee]

Oh Maggie..sorry I've taken a while to reply 🤦

I don't have sjogrens (can say it but can't spell it) 😹I do put eye drops in nightly n have dry mouth..but tbh I don't check these things out until it's a real problem..don't like surgeries n hospitals!!

I'm treated by dermy only who's fab!! However he did say that he didnt have any lupies a while back..so I think I'm a newish case for him too!! At first he diagnosed me with allergy to flucloxacillin..this was coz I was admitted to hosp with an all over body rash..that was the first time I was prescribed pred!! One of his junior docs actually found the lupus!! N I do think that my dermy was a bit doubtful n apprehensive about the diagnosis at first..but then he saw me in full flare in August last year!! Now he's on board 😹😹 that's when he started me on Ciclosporine..gave me a leaflet..n it says that ciclo is prescribed for pruitic (🤦spelling again)skin conditions!!

When I went in sept n showed him all the rashes..he said it's lupus activity..increase ciclo!!

Kat 😽😽 xx

[maggielee in reply to Krazykat26]

Sorry that it keeps flaring, it is awlful...my skin calmed down, but the rest of my body is rebelling....I was under dermy, but it rheumy who knew enough to give me a skin biopsy & hand me back to dermy...As things progress went nack to rheumy (re referral long wait again).... Not knowledgeable enough on lupus, sjogrens...so why nack to specialists in their field

...ml

[maggielee]

I should mention I am not on any steriods due to bones, so nothing for flaring or for me flu like feelings....ml