Had my 1st appointment with rheumatologist. Had lots of blood tests which I’m waiting for results but she was confident that I don’t have systemic lupus and is letting dermatologist take over my care.
My initial letter from biopsy’s suggested that I have subacute cutaneous lupus but I’m really struggling to find any info on this. I’m seeing hospital dermatologist in June and have been given creams for face rash and chest which seem to be working quite well and told to be careful about using face creams with sun factor in it. Is there are other info I can have on this as I’m not sure I can wait u til June?
Whilst I’m feeling reasonably well st the moment but I’m still having fatigue and eye issues and not feeling 100%
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Raven_claw
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I was diagnosed with subacute cutaneous lupus (SCLE) in 2017. I'm only under the care of a dermy..totally get your frustration about the long waiting times..I had to wait for about nine months!?!?
When your blood results r in..it will confirm initial diagnosis..apparently as well as positive ana +dsDNA we have positive antiRo n La results to which indicate SCLE!! 🤓
U said that you've been prescribed creams that have been helping your rashes..do get the butterfly rash? I get rashes everywhere but never had a facial rash..n apparently that's quite common with SCLE!!
Sue petal has suggested dermnetz n I wholeheartedly agree that this is the best site for u to look at..I only knew about it before Xmas when the wonderful Maggie Lee posted me the link..n when I looked at SCLE..it was totally what I had..really good pics n lots of info!! So much so that I asked my dermy if I could switch immune suppressed by to methotrexate..he agreed n I've been on it for about 11wks with really positive results!!
If u would like to know about my lotions n potions I'm happy to share that with u..I have a feeling they might be same as yours.
Unfortunately I am on lots of medications now too..but initially I was prescribed hydroxychloroquine but that was only after I'd seen dermy!!
It's a good idea to keep a symptom diary n take pics of skin involvement coz these r very useful for your docs n who knows how you'll be in June!!
Another thing I will say is that u might become UV sensitive..it was only after my diagnosis..my dermy gave me a leaflet on SCLE n were advised to take extra precautions n avoid strong sunlight..I am very sensitive to all UV n flourescent n halogen artificial lighting..lupus UK website has a link to eclipse..n u can read all about photosensitivity there.
Any questions feel free to ask n I'll try n help..there r a few of us with SCLE in the group..you are not alone 🤗🤗
Thank you for responding. The info is so helpful to me I am a bit of a control freak so I’m really struggling with the lack of info. I have been taking pics and sorry you have it too but it’s good to hear from someone in the same position.
Lots to take on board & little information specifically, but lots that relates to your symptoms on lupus UK and other lupus groups in the states, etc.
Don't assume SCLE is just only about skin & UV light sensitively, you could have feelings such as achy muscles, flu like symptoms, headaches, high blood pressure, depression and also, be aware of Sjogrens which I was diagnosed by a prof I went for 2nd opinion shortly after SCLE diagnosis...
Hydroxy was fine for some time really help my ever growing rash which started with UV & just kept on going. Others symptoms progressed. with lots more fatigue & sjogrens overtook the SCLE & my dermatologist was clueless. I got re-referred to rheumatology by my GP.
Now I am also on mycophenolate & various other meds for hypertension, cholesterol, etc. which helped...
Have a good read about sjogrens as lupus & sjogrens often overlaps...dry eyes, mouth most notable to start...
Knowing yourself & how your feel is so important in getting better care... I have learned so much from being part of this forum & I am still learning all the time, great fan of so many contributors here...
Do take pictures like Kat suggested, really helps doctors to see... There are different rashes...do get familiar.. Also, when you feel unwell & if something triggered it? Light, overdoing it, etc. Takes time for hydroxy to kick in so be patient...
Hope this is a good start...
Remember your system is attacking itself & that your body is working hard & this can be exhausting...
Thank you for your reply too. It’s all so helpful hearing from others in the same situation. Makes perfect sense that I get so tired. I do get muscle aches mainly thighs and flu symptoms but the flu doesn’t come. Hard to explain to loved ones that you just feel ‘unwell’ again!
This site has been the best comfort and everyone has been so helpful and supportive.
I was diagnosed with scle in 2015 after having had Sjogrens Syndrome since 2001. Like most of us on this site I started off taking hydroxychloroquine. And just a couple of months ago I started on methotrexate. As others have said symptoms come and go and some doctors are great, others not so. However you can always find information and support on this site. It really has helped me so much knowing that I’m not the only one with this nasty condition. There‘s a lot of us out there, some with amazing knowledge and tips for coping. Welcome!
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