Subacute Lupus Erythematosis??

[Minimouse1]

Recently diagnosed with subacute lupus erythematosis but Dermatologist says only skin involvement. Rheumatologist only did APS test for sticky blood. Not sure of protocol & who should do what but I have so many symptoms Im sure it cannot only be skin involvement. Can anyone advise please?

[Krazykat26]

Hi Minimouse 🤗love your name! SLE stands for Systemic Lupus Erythematosus (dunno if I've spelt that right).

SCLE stands for Subacute Cutaneous Lupus Erythematosus.

The title of your post n then u saying that you're diagnosed with SLE is contradictory..although one can have both so can u clarify..who diagnosed you?

I have SCLE which is mainly skin involvement but I do have other symptoms too. I'm managed mainly by dermatology. 🌈😽😽Xx

[Minimouse1 in reply to Krazykat26]

Yes I realise that now - I've edited my post. The letter from Dermatology confirms Subacute Lupus Erythematosis which I think imeans skin only. I was given strong cream & steroid tablets which got rid of my rash but now the rash has gone I still have the Malar butterfly on my face & other symptoms. Saw the rheumatologist but he says he doesn't have an explanation for the symptoms & just ordered bloods for APS - sticky blood.

[Krazykat26 in reply to Minimouse1]

Ok thanks for that 🤗So as you've been diagnosed with cutaneous lupus I guess that you've been covered in rashes? I get them everywhere EXCEPT my face funnily enough..well it's not funny..no way is it funny!!

Did your dermy do an ANA test? Or did they diagnose u from a skin biopsy? Are u on any other medication? 🌈😽😽Xx

[Minimouse1 in reply to Krazykat26]

U&E's, CRP & LFT were normal but raised ESR & low Vit D. The ANA & anti-La antibodies were positive but ds-DNA antibodies were negative whatever all that means! X

[Krazykat26 in reply to Minimouse1]

😹ok I'll try to help but there r others on her who can explain bloods better than me so hopefully someone else will chip in. ANA is a blood test for lupus..however as I understand it healthy people can have positive ANA too. If ANA is positive they usually give a titre which indicates how positive u are 1:80 is weak positive n it goes up from there. When ANA is positive the sample is automatically further tested..that's the ds-dna part n if that's positive too then lupus is diagnosed. I am Anti-La positive too and Anti-Ro which are blood indicators for Sjogrens. There's a very good site called DermnetNZ u might want to take a look at. It's got loads of skin rashes on there n you can have a look n match your rash so to speak.

What other symptoms do u have? Are u on any meds? 🌈😽😽Xx

[Minimouse1 in reply to Krazykat26]

Are we allowed to put photos on here & how many? Yes they said I have Sjogrens but tbh my symptoms for that are very mild - occasional dry eyes & mouth. So I'm guessing that as my ds-DNA was negative this is the reason they're saying non systemic lupus with only skin involvement. My symptoms are extreme fatigue, confusion like dementia, numbing sensations halfway up my back in the middle of my spine & also inside my head which moves around in patches (CT of head clear), rhs episodes of groin, hip & back pain which last for about 6wks then subside but are bad enough I can hardly get up the stairs. Tinnitus & other minor things like blurry eyes. All vitamins fine as checked 🤔. I'm not on any meds - was just given steroid tablets for rash etc.

[Krazykat26 in reply to Minimouse1]

Yes u can post a photo..just above the reply button there's a little mountai..click on that n u can post a photo.

Example photo

[Krazykat26 in reply to Krazykat26]

It's the mountain icon

[Krazykat26 in reply to Minimouse1]

Do u keep a symptom diary? Are u photosensitive? I'm surprised you're not on any meds..my first contact with dermatology was in 2015 when I was admitted to hospital with a head to toe rash..I was treated with steroids n steroid ointment and dermol 500 for soap substitute and then discharged. Two years later in 2017 I was very ill again n this time I had severe ulceration on the palms of my hands n the soles of my feet..along with uncontrollable rash n feeling generally awful.

Once I was diagnosed with SCLE I was placed on a drug called hydroxychloraquine which I've since learnt is usually the first drug that's prescribed for lupus..whether systemic or cutaneous. Has your dermy mentioned this drug to u? 🌈😽😽Xx

[Minimouse1 in reply to Krazykat26]

One looks like this

Rash 1

[Krazykat26 in reply to Minimouse1]

Yes

You've shown me yours..I'll show u mine 😉

[Minimouse1 in reply to Krazykat26]

Those photo's of mine are older ones as I don't have photo's if the more recent rash which resulted in the biopsy being done but it was very similar to yours.

[Minimouse1 in reply to Krazykat26]

The other looks like this in sun exposed areas.

Rash 2

[Krazykat26 in reply to Minimouse1]

Yes

My back which is never exposed to the sun

[Minimouse1]

No I'm not on any medication but dermatologist has ordered some more bloods & may mention hydroxy when he gives me the results. I don't keep a symptom diary but yes it seems to be sun related but I sometimes get the Malar butterfly without a body rash. Does hydroxy have any side effects & is this taken permanently or only when there's a rash? I've tried to add photos but it seems it will only let me add one & I have 2 different types of rash which look very different 😳!

[Krazykat26 in reply to Minimouse1]

Our rashes are very similar. I don't have this currently but thats coz I'm on lots of meds to keep it at bay.Hrdroxy was the first drug that I was prescribed..it's an antimalarial drug that helps with lupus symptoms. It is a long term drug and is prescribed according to body weight n symptoms. Some people can't tolerate it but I'm fine on it. The only side effect I found was heartburn but I started taking meds with a small glass of goats milk.

Keeping a symptom diary will help you to keep track of your symptoms n in time u may even discover things that exacerbate them..weather, foods, humidity , stress all have parts to play in lupus..so noting things down may help u to manage better.

The other thing I'll mention about hydroxy is that it's important to get your eyes tested regularly as it can cause some damage when taken long term.

I'm extremely photosensitive n have to cover up completely..even on overcast/cloudy/rainy days. I'm also sensitive to florescent lighting so I have to wear a wide brimmed hat when outside n going into places like hospitals n GP surgery. I also have special lighting at home n I have my devices turned low so the blue light doesn't make me ill.

I don't get a Malar rash though n you'll find that no two lupies are alike but we have strong similarities 🌈😽😽xx

[Minimouse1 in reply to Krazykat26]

Oh wow yes, the rash on your back is very similar to my last rash which I had not so long ago, but I didnt take photos of that one. The photos I sent you are from last year and were from 2 different episodes - as you can see they look different. Anyway I defo tested as subacute erythamatosus lupus. I think stress is a huge factor with me but I did not realise that accompanying symptoms other than a skin rash are common with SCLE. I thought only SLE would carry the other symptoms Ive been experiencing....

[Krazykat26 in reply to Minimouse1]

Two distinctive types of rash..and I don't usually get them both together either! I suppose we're fortunate in that inflammation can clearly be seen...but lupus is lupus n let's face it skin is our biggest organ..it's everywhere..protects us from infection..n generally holds us together!!

Hydroxy alone didn't help me that much tbh but boy when I tried to reduce it I suffered!!

Right ok I think the best thing for me is to give you an overview of my journey so far.

I was diagnosed in 2017..was prescribed hydroxy n a course of prednisolone. Had some improvement..however as I reduced the steroids I would flare up again.

In 2018 I had a major flare n got urgent appt with my dermy who increased pred again and prescribed me an immunosuppressant called Ciclosporin. I found the ciclosporin very difficult to take and after 18 months it was clear that it wasn't suiting me..it even gave me high blood pressure which I've never had before! All during this time I was trying to reduce steroids n eventually come off of them but dermy kept saying increase Ciclosporin n I didn't want too coz I felt so ill when I took them..big silver bullets they were n I found it so hard to get them down n keep them down. 🤢🤮

Thanks to this wonderful forum I discovered DermnetNZ site n after looking at SCLE rashes on there I found I was typical of the condition. I also discovered that it's best treated by a drug called Methotrexate. In 2019 I asked my consultant if I could try methotrexate (MTX) n he agreed..I have tolerated it well n my skin is better than it's been for a very long time!! I also have more energy.

I still flare n I'm still waiting for appts to speak to dermy about increasing the MTX so I can further reduce the steroids.

Topically I'm prescribed Dermol 500 lotion which I use as a soap substitute and moisturiser..it helps to receive any itching. I can't use soap.

Betnovate ointment coz I found creams don't stay on for long enough..ointment is longer lasting. Dermovate ointment is a stronger steroid ointment for when Betnovate doesn't work.

I also use a steroid tape for when I have lesions on my fingers..Fludroxycortide Tape it's called.

When my skin is inflamed and itching I take Piriton.

I would strongly advise u to treat yourself to a lovely notebook specifically for u to record n track your symptoms.

Stress drives Lupus so maybe think about relaxation techniques or stress management/meditation.

The main thing is though that you're here..You are not alone!! 🤗🌈😽😽Xx

[Minimouse1 in reply to Krazykat26]

Thank you for your experience & your time 😁

[Krazykat26 in reply to Minimouse1]

You're welcome 🤗🌈😽😽xx