Subacute cutaneous lupus

SoVeryVeryBored · 2026-02-11T23:14:53+00:00

Hi all Does anyone have this or know anyone who has? I’ve had very bad skin over the last 4/5 months on my chest and neck which I thought was just very extreme eczema that wouldn’t clear so went to the gp for some stronger topical steroid cream and they think it might be this, which has been agreed by dermatology on seeing pics and I’m waiting for a referral. Reading around on line it look like there isn’t much to be done except avoid the sun but I am a bit unclear on links with or development into ‘Full’ lupus, which sounds quite scary. Any experience or advice gratefully received.

User8877662 · 12/02/2026 07:40

I had childblain lupus which was mostly skin symptoms but enough blood indicators to qualify for the "full" type. It really isn't as scary as it sounds. Lupus can come and go, sometimes the symptoms disappear completely and there are lots of treatments to manage it. The diagnosis is usually a combination of bloodwork and physical symptoms that have to show up at the same time. The worst of the physical symptoms I had was just a few days of feeling feverish/achey which I put down to a virus.

If you get diagnosed they will give you anti-rheumatic medication (most likely hydroxchloroquine) which is well tolerated. I took it for over 10 years with zero side effects. The medicine clearly up all of my skin issues within 2 weeks, it was miraculous. I always had sores and redness on my hands, particularly after exposure to cold. However you're advised to keep on taking it regularly, at least for the first 5 years. Many doctors believe that the symptoms you get within the first years after diagnosis is indicative of the course of your disease. So if you only have mild symptoms for 5 years (ie nothing involving hospitalisation) then you will most likely stay with those. The chances of cutaneous lupus developing into the most serious type with organ involvement is extremely, extremely low.

Sun exposure is a slight myth because not everyone gets worse with heat. You need to test it out for yourself. In my case, I notice a significant improvement after a moderate amount of time in the sun (maybe UV or vitamin D) and it always got worse in winter. All of my skin issues disappeared after taking HCG and never came back. I've since stopped the medication and everything is still stable.

If you plan to have children then having lupus could be a pain in the ass because you will need to get tested for extra things (antibodies, clotting factors etc). That was the most annoying part of the illness imho. It didn't really affect me but pregnancy was quite anxiety inducing, however everything turned out fine in the end.

WinterBlues26 · 13/02/2026 08:28

but I am a bit unclear on links with or development into ‘Full’ lupus, which sounds quite scary.

Bumping this up for OP as I'm very unclear about this part too. My Rheumatologist is useless.

Original poster

SoVeryVeryBored · 13/02/2026 18:52

User8877662 · 12/02/2026 07:40

I had childblain lupus which was mostly skin symptoms but enough blood indicators to qualify for the "full" type. It really isn't as scary as it sounds. Lupus can come and go, sometimes the symptoms disappear completely and there are lots of treatments to manage it. The diagnosis is usually a combination of bloodwork and physical symptoms that have to show up at the same time. The worst of the physical symptoms I had was just a few days of feeling feverish/achey which I put down to a virus.

If you get diagnosed they will give you anti-rheumatic medication (most likely hydroxchloroquine) which is well tolerated. I took it for over 10 years with zero side effects. The medicine clearly up all of my skin issues within 2 weeks, it was miraculous. I always had sores and redness on my hands, particularly after exposure to cold. However you're advised to keep on taking it regularly, at least for the first 5 years. Many doctors believe that the symptoms you get within the first years after diagnosis is indicative of the course of your disease. So if you only have mild symptoms for 5 years (ie nothing involving hospitalisation) then you will most likely stay with those. The chances of cutaneous lupus developing into the most serious type with organ involvement is extremely, extremely low.

Sun exposure is a slight myth because not everyone gets worse with heat. You need to test it out for yourself. In my case, I notice a significant improvement after a moderate amount of time in the sun (maybe UV or vitamin D) and it always got worse in winter. All of my skin issues disappeared after taking HCG and never came back. I've since stopped the medication and everything is still stable.

If you plan to have children then having lupus could be a pain in the ass because you will need to get tested for extra things (antibodies, clotting factors etc). That was the most annoying part of the illness imho. It didn't really affect me but pregnancy was quite anxiety inducing, however everything turned out fine in the end.

Thank you, I really appreciate you taking the time to reply and this is helpful and reassuring. Winter onset for me too which had thrown me a bit with all the sunlight stuff and was feeling a bit down as I’m very outdoorsy. I’m too old for kids so hopefully can avoid all the extra stuff.

OP posts: