SCLE - Can anyone answer this question for me? How do you find out which type of SCLE you have?

[Wendy39]

maggielee had posted some months ago about SCLE and it's been on my mind. I did reply to her and ask Paul to help, but couldn't tag him in for some reason.

This is the link to maggielee's post.

healthunlocked.com/lupusuk/...

Here's my question.

Paul,

I have been thinking about your reply to Maggielee, as above, for a while now. Maggielee and I have meet and discussed our diagnosis a couple of times.

The information you have given above is more than any doctor has offered me, by way of explanation, at any time. When I was first diagnosed with SCLE the rheumy and dermy told me I had Cutaneous Lupus. But my own reading told me that SCLE was in fact an overlap between DLE and SLE. And now my diagnosis has been amended to SCLE with systemic features. In fact my GPs always write SLE in their notes. My symptoms are certainly not limited to skin involvement and I am unwell all year around and not just in the summer, as they originally suggested would be the case.

I have managed to obtain the letters from the Consultant Dermy I saw twice, after my diagnosis of SCLE back in 2013 and still am non the wiser as to which type of SCLE I have. I have also had a biopsy at the nape of my neck but still am not sure which type I have. It seems to play a part in how your disease will pan out. Am I right?

How will I know whether I have psoriasiform/papulosquamous SCLE or the annular/polycytic SCLE?

I look forward to your response.

Wendy

[maggielee]

Hi Wendy it is good timing as I am a couple of days from seeing the Professor about my lupus. I reread that discussion, good food for thought and concluded from the info on the link to Molly's fund that my SCLE is annular lesions as the rash which started on my chest as lumps, went to my face and arms and kept spreading were red ringed and spread outwards and healed without scaring and resulted in depigmentation of my skin.

At the moment travelling I have been experiencing a burning sensation in my face and redness on my cheeks and neck. This is even with 50 factor. Getting lots of fresh air so lots of UV 😚 and thus I assume the redness and a little cognitive problem i.e. not being able to finish a sentence at my worse.

What was/is your rash like? Can you figure it out from the description on the website? Will ask about the stats relating to SCLE and SLE and crossovers. ML 🙋

[Wendy39 in reply to maggielee]

Great. Thanks Maggielee. Just can't seem to find the answer. I need to read the doctors letters and the biopsy results again, with a clear head. X

[maggielee in reply to Wendy39]

Hi will be interesting to compare notes... ML

[Paul_Howard Partner LUPUS UK]

Hi Wendy39 ,

I'm sorry that I missed your reply on this previous post. I have now responded to it and I will do the same here for you;

All I can do is share what The Lupus Encyclopedia says about this;

"Subacute cutaneous lupus erythematosus (SCLE) occurs in two forms. One appears as red, scaly patches, almost like psoriasis, and is called either psoriasiform SCLE or papulosquamous SCLE (both referring to the same thing). The other form of SCLE appears as reddish-colored rings of rash called annular or polycyclic SCLE. One importance of distinguishing the two forms is that people who have the annular (polycyclic) form of SCLE appear to have milder SLE and are less likely to get kidney or brain involvement."

You can find a little bit more information about these two forms of SCLE at mollysfund.org/2014/07/cuta... as well.

[Wendy39 in reply to Paul_Howard]

Thank you for your reply. I tried to link you in but couldn't get that right.

I can't remember exactly how my photo sensitive rash looked back in 2013 and not realising the relevance at that time, I didn't take photographs.

I had it on my arms, face, chest and back. Mine are like blisters. They got infected too. But when looking at the photos on the sites I can't relate what mine looked like.

I thought the Dermy might have classified it in his letters to my GP back in 2013 but he didn't.

Quite frustrating.

My diagnosis always confuses me in that I meet the criteria for SLE. My symptoms certainly aren't just skin. The criteria for Acute Cutaneous Lupus - ACLE - are malar rash and hair loss - so I fit that too. Also I read SCLE isn't itches but mine has been, sometimes but not always.

I guess 3 years on, I still don't have the SCLE narrowed down to which type - which might help my understanding of it.

Thanks Paul.