Introducing myself: Hello everyone I have cutaneous... - LUPUS UK

LUPUS UK

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Introducing myself

Shenzie profile image
Shenzie

Hello everyone I have cutaneous lupus and am new to this group

32 Replies

Hi 👋 welcome.great bunch here who are honest, dont judge and are willing to support each other through good times and bad times.join us in ranting,raving,laughing and crying. We are all in the same boat weve just got different paddles xxxx

Ah thank you will be good to have a laugh and moan x

We share photos,crafts,pets,achievements and even blonde moments after all there is still life beyond lupus.there is always someone who can relate if not someone will offer hugs and support .there is a wealth of knowledge and advice gained from years of experience so do ask .I hope you enjoy our group .keep smiling xxxx

Hi Shenzie 🤗 welcome aboard the good ship "Unsinkable" 😹This a fabulous place where we can connect any time of the day with others who live with lupus all day, every day!!

I'm a fellow cutaneous Lupie!!

Good to meet u 🤝🌈😽😽xx

Shenzie profile image
Shenzie in reply to Krazykat26

Ah thank you do you outbreaks of it only got diagnosed 2months have a bad outbreak all over torso level to meet you to and thank you x

Krazykat26 profile image
Krazykat26 in reply to Shenzie

I was diagnosed in 2017 n it's taken us till 2019..me along with the dermy n these wonderful peeps here to get treatment that's actually helping me now!! If u have a look at my profile you'll see pics of different rashes that I get. My torso?!?! It was covered in rashes back especially..arms legs..everywhere EXCEPT my face. I've not experienced the famous Malar rash..just everywhere else!!

There a great website DermnetNZ..there's loads of pics on there n u can find your particular rash n make comparisons.

Are u under a dermatologist? R u taking any meds yet?🌈😽😽xx

Shenzie profile image
Shenzie in reply to Krazykat26

Am on prednisolone 5mg &hydroxychoroquine 200mg can't find ur pics though x

Krazykat26 profile image
Krazykat26 in reply to Shenzie

Ok hydroxy takes a long time to take effect fully..up to three months. Pred..have u reduced down to 5mgs if so from what dose originally? Hydroxy is usually prescribed according to body weight so 200,mgs is the minimum dose n can be increased..unless your a petite build. Have u got any topical treatments? Steroid ointments..an emulsifying lotion like the Dermol I mentioned earlier? 🌈😽😽Xx

Shenzie profile image
Shenzie in reply to Krazykat26

Yes have dermol started on20mg now on 15mg x

Shenzie profile image
Shenzie in reply to Krazykat26

Yes am under dermi x

Krazykat26 profile image
Krazykat26 in reply to Shenzie

If u tap on my profile pic you'll see my previous posts..there's quite a few of them though but some of them are pics of my skin rashes 🌈😽😽xx

Shenzie profile image
Shenzie in reply to Krazykat26

Thanx x

Krazykat26 profile image
Krazykat26 in reply to Shenzie

Is your rash like this?

My back during a flare
Shenzie profile image
Shenzie in reply to Krazykat26

Yes it is I have it worse down side of face its clearing up abit now had really bad scabs all down face x

Krazykat26 profile image
Krazykat26 in reply to Shenzie

So you're on 15mgs pred..is that right? When I have a major flare I get prescribed 20mgs n then reduce from there. However I've been on them for a long time now so I have to taper really slowly. At the beginning of my journey steroids were the most effective treatment to clear things up. Unfortunately I'm still trying to reduce years later.

How long have u been on pred n how quickly are u reducing? They're very effective short term 🌈😽😽xx

Shenzie profile image
Shenzie in reply to Krazykat26

Have been on prednisolone for about 2months reduce every 2weeks

Krazykat26 profile image
Krazykat26 in reply to Shenzie

At the start of my journey pred really helped to deal with the rashes short term but it turned out for me that I needed immunosuppressant med in the form of methotrexate which I take now.You're at the start of your particular journey n no two of us r the same. Keep notes if rashes n changes in medication such as reduction in pred n how your feeling..take pics to show your dermy..this will all help u to get a clearer picture of what's helping n what isn't.

It takes time to get the right combination..patience is a virtue in this buisness.

Do u take antihistamine to ease the itch? I take a piriton when needed 🌈😽😽xx

Shenzie profile image
Shenzie in reply to Krazykat26

No but I will now x

Shenzie profile image
Shenzie in reply to Krazykat26

Think I have lost my feeds help

Shenzie profile image
Shenzie in reply to Krazykat26

Well because I had my first outbreak yesterday thought was a rash didn't think lupus took photo sent to dr.got phone call from dr he said it wasn't lupus he said eczema I told him it wasn't so riled with him he has no clue but hey ho neither do i rant over with

Barbara17 profile image
Barbara17 in reply to Shenzie

Hi Shenzie and welcome to the forum. I agree with everything that Krazycat says and I am also a cutaneous lupie. I had a really bad flare a couple of years ago which took ages to settle and my face was also affected so I do sympathise with you. I’m ok at the moment although I’ve had a dodgy few weeks as my dermie tried to tweak my medication. I don’t take antihistamines but rely on dermacool lotion for the itch. I’m sure you’ll find loads of help and advice here.

Shenzie profile image
Shenzie in reply to Barbara17

Thank you have learnt quite a few things in this group x

Hi,welcome to the forum.

Thank you am new to all this

Welcome Shenzie. I’ve not been here long but it’s great for sharing information and support ☺️

Ah thank you have learnt some things in here just this afternoon x

Welcome to the house of fun🤪

Thank you

Hi and welcome to the group x

Shenzie profile image
Shenzie in reply to svfarmer

Thank you it is lovely to speak to people about lupus and have learnt quite a few things which I can relate to now

Hi Shenzie and welcome. You will find support, information and a few laughs along the way here xx

Thank you x

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