Rash still unchanged after 22 months

[Cath24]

Has anyone had this, or know someone who developed a rash that just never went away and won't disappear with topical treatment? It's blanching, flat, smooth to touch (no scaliness at all), doesn't itch, hurt or burn. Several rashes are spread around mostly on my back, bottom, and thighs, largest is 3cm, with most 1 to 2 cm or smaller.

I got this several weeks after mild case of covid over 22 months ago, and I sometimes get a new rash or two! Never been the same since.

Tested very high ANA positive, homogeneous with everything else negative + joint pain. CRP & ESR very low. Blood results normal. In my early 30s, female, light skin. GPs don't know, and at the moment Dermatology won't touch anyone unless they have something life threatening. Any ideas while I wait? I feel like there is no one else in the world who can relate to this, having searched for answers day and night. Thanks, Cath x

[sarahalice]

I had a lupus rash on my arms for years. Went away about 3yrs ago and hasn't been back since.

[Barbara17]

Hi Cath. I have SCLE and developed a rash in October 2023 which is still ongoing. It has almost cleared a couple of times but recently it has flared all over. In December my dermatologist started me on Mepacrine which I think made things ten times worse as the rash is now scaly and itchy. I have stopped taking the tablets and I think it is very slowly clearing. I am lucky in that I have a monitoring appointment with the consultant next Monday and I’m hoping she can come up with an alternative treatment. I understand your frustration as my rash is driving me mad.

[Cath24 in reply to Barbara17]

I am so sorry that you are going through this too, as I know how isolating it can feel. I will let you know what they come up with for me as soon as I finally have the punch biopsy done, as there is always a chance it might help you too if you suggest it to your dermatologist. I have not been officially diagnosed yet as my ENA panel came back negative despite a very high ANA titer, so I am still at early stages despite this ordeal having started 2 years ago.

Did you try any topical treatment? Because the rash is blanching, you would expect it to be caused by inflammation, so a hydrocortisone should in theory help - but it doesn't. This is the great mystery I think we have. With a palpable rash that's not blanching (as seen in vasculitis), the blood vessels are actually damaged, blood is leaking. This isn't our case - so why won't the rash ever go away? It's driving me crazy too. My rash looks like this (ignoring the ones with white scaliness, as I have none of that): dermnetnz.org/imagedetail/6...

[Barbara17]

I was diagnosed ten years ago after an adverse reaction to medication and my rash is similar to that in the picture. Once the first flare died down it was fairly well controlled for a few years using only hydroxychloroquine and dermovate ointment, with occasional steroids to control flares. However for the past five years I’ve taken methotrexate but the efficacy of that too seems to have waned hence the mepacrine I started on in December. I live in hope the dermatologist finds something that works without horrendous side effects! Hopefully you get an appointment soon and get some answers

[Cath24]

Would it be drug-induced SCLE you have? I hope that it can go in remission for you. I'm not sure we have the same condition though, as I read that SCLE is scaly and shows up on sun-exposed areas - mine is the very opposite, but you never know. I hope your appointment goes well - I might have a bit of a wait, but I will let you know what they find, especially if it does turn out to be SCLE and the medication they prescribe clears my rashes without the side effects, and it turns out to be milder and maybe good for you as well!