SCLE atypical rash?

[sandibea]

Hi all, thank you for allowing me to join. My husband saw a dermatologist yesterday who thinks he has SCLE. He has taken a biopsy & blood tests. The rash is almost identical to pictures I have seen, but it is on areas which have not been exposed to the sun. There are small lesions on his forearms and lower legs but the main rash/inflammation is on his trunk & thighs (areas which haven't been exposed to the sun. Does the rash trigger from one area of exposure and then spread or stay on sun exposed areas only?

Many

[Barnclown]

Hello sandbea & welcome to our winderful forum

I have SLE and my rashes are diverse: some types are in response to sun exposure, some to heat + sun exposure, some occur through clothing...some relate to small vessel vasculitis secondary to my SLE (these turn up without sun exposure and are usually on areas of thin skin over bone eg shins, top of feet & hands, knees, elbows), then there are the pernio (chilblains)...i could go on

Lupus tends to manifest very indiviually in patients..we each have our own combo of multisystem signs & symptoms

I hope something in there helps. here is a link to the Lupus UK website’s downloadable publications page, where you’ll find info on skin manifestations etc

lupusuk.org.uk/publications/

🍀🍀🍀🍀 coco

[sandibea in reply to Barnclown]

Thank you for your response it appears that Lupus doesn’t follow any rules. I have been reading & the description for SCLE says the rash is usually on sun exposed areas. My husband’s is on all areas that aren’t exposed especially the top of his thighs wear thick clothing is worn

[Barnclown in reply to sandibea]

Yes. Totally happens! Rashes without actual sun exposure...i certainly get these

The important word is “usually”....eg many of us are “unusual”, partly because many of us are managing several different comorbidities - quite often other types of immune dysfunction & connective tissue disorder diseases...and many of these can manifest in ways that are slightly different from the “usual” lupus manifestations

[Lilrosie1]

I have a rash on my neck and it has spread it cracks open and white plugs and rocks come out just got biopsy I hope they figure it out fast.

[sandibea in reply to Lilrosie1]

Thank you for response

[maggielee]

Hi also add my welcome to the forum. Adding to Barnclowns comments, I have SCLE it's good your husband is getting the right tests to clarify it. My rash once triggered by the Sun went to all parts, it seemed to spread, arms, back, chest, some on my face & neck. I finally got treated with hydroxychloroquine which helped greatly, as I also had achy legs & tiredness. I make sure to cover up 😎& wear 50 factor. The hydroxy takes time to ',kick in' and for A while I felt ok (except for giving up the 🌞 Sun 😲).

A good website i found is:

dermnetnz.org/topics/cutane... , a New Zealand site that at least shows photos of different cutaneous lupus. The rash i had, looked like the SCLE photos...it seemed to spread outwards, like new skin being formed as part of my body wanting to heal itself as it attack existing skin...

I should mention that like many of us we have other sometimes very complex health issues... I noted that I began getting Raynards & now have confirmed Sjorgrens which goes hand in hand with SCLE (so other symptoms & extreme tiredness despite being out of the sun), so taking additional meds to try & function day to day..... Sjogrens is another autoimmune that it has its own complexities....

I should mention if i get to much U V I get some symptoms such as burning feeling, tiredness, foggy brain, but so far the rash has not been triggered again like it was..... Wish him all the best... ML

[sandibea in reply to maggielee]

Thank you for your response. My husband is well in himself, just the rash, which is very wide spread and sore. I hope he doesn’t develop any other symptoms

[leslieliesel]

The Biopsy tells a lot about the rash....I insisted on a biopsy...not for one second was I thinking lupus..I was just tired of wild rashes and different drs saying different things...anyhow my biopsy came back suggesting discoid lupus or dermatamyositis(sp)...did all the blood work..No Dermatamyositis yes to subacute(skin) Lupus..and aches and FATIGUE

[sandibea in reply to leslieliesel]

So do you know which one you have?

[leslieliesel]

Yes..subucate(subacute?) Lupus....weird to be happy to have subcutate(sp?) lupus, but Dermatamyositis seems t... ..well I don't want it...

[sandibea in reply to leslieliesel]

My sister has battled SLE for approx 20 years so yes I agree SCLE is the lesser of the evils!

[RenoGem67]

Hi. Welcome to the forum. My rash never goes away and is predominately on my arms, upper thighs, breast and midriff. Also on my scalp. I used to get a hive like rash for decades with sun exposure and then it changed in appearance and was constant with no sun exposure needed. Lupus is a crazy disease, I pray he doesn’t have it. If he does this forum has helped me so much. Some days I think I’m going crazy with all the strange symptoms. Positive thoughts and strength coming to you and your husband from Northern California.

[sandibea in reply to RenoGem67]

Thank you for you kind thoughts. As yet he only has the rash (but very severe), I'm hoping it isn't SCLE but the consultant was pretty convinced it is. I'm aware of the implications as my sister has had SLE for approx 20 years and battles each day. SCLE is the lesser of the evils!

[Flyhook in reply to RenoGem67]

Sounds similar to my experience rashes at first were mild and controlled by mepacrine. But lately it is all over and permanent, now on hydroxychloroquine and its not helping and another problem i have now is the skin on my forearms is now thinned with dermovate use and split the skin now with slightest knock.