cutaneous lupus

[Nellons]

My daughter has (we think as no one is sure!) cutaneous lupus which affects her skin. Her regular flare ups result in very painful skin lesions which blister and bleed. She is under rheumatology and dermatology and after two years still not found medication / immunosuppressants that works and shes seen several different consultants. Does anyone else suffer with skin lesions on chest, legs, head , the sores on her head are so sore she can’t brush her hair. All the ‘specialists’ are baffled. Biopsies are inconclusive! Does anyone else suffer with this type of skin condition associated with Lupus ?

[Lizard28]

It was my dermotologist that diagnosed my lupus, I had lesions on my back, shoulders, face and scalp. Mine were a bit itchy, but not sore, I could actually peel the skin off mine and it wasn’t sore and didn’t bleed at all. My dermotologist said it’s like peeling a carpet back, I was lucky between taking steroids for swelling on my hand at the time and dermovate and elecon for my face, mine did start clearing up. I just keep an eye on it, if it comes back, the dermovate works. Keeping out the sun is a must as well. I know how frustrating it is, not to be diagnosed. I hope they find out soon and get it under control. I’m also on Hydroxy which I have been for years now.

[Mctd]

I get something on my feet... the doctor doesn't know whatbit is and can't decide whether it is linked to MCTD or not. It starts as small blood like spots, that then blister and double in size, becoming very painful, until they eventually dry up and the skin peels off. I had a flare this last few weeks and I really struggled walking. I've tried all sorts of creams and nothing touches it. Not sure if it anything like yiur daughters, but hope you find something to ease it.

[JStro52]

I do and broadly have it under control now by avoiding sun exposure (SPF every day, hats, covered arms and legs) between March and October and regular doses of hydroxychloroquine. When I have the reaction there’s not a great deal that soothes of hastens its departure. A sea salt bath helps a bit.

[LuluM25]

I do and have done mildly for years but also more recently have had large and nasty flare on upper body - face, neck, chest and arms. I have SLE so the lesions were biopsied and sub cutaneous lupus was diagnosed. This had been previously diagnosed but Dermatologist wanted another confirmation as it was a big flare. I permanently now have a few lesions on my face that I dab with steroid cream, not to much effect, but also take Prednisolone. The dose of this I vary according to rash activity. I also take hydroxychloroquine and Azathioprine for other lupus symptoms. My advice, see the dermatologist asap and get a higher dose of Prednisolone prescribed. I was taking 30mg daily when at its worst and it takes months to calm down and abate to minimal nuisance. Best wishes to you and your daughter x

[Nellons in reply to LuluM25]

thank you for your reply. She is under dermatology at guys hospital in London but he is baffled. Perhaps we’ll try prednisone again. Thank you

[ancoats23]

I have just come to the end of a bad skin flare up - I first thought it was chilblains. But it went on for 4 months skin peeling off, pain and then my nails breaking off. All normal activities were difficult and I was leaving trails of blood when I tried to do housework. I was prescribed Fucibet ointment which made no difference - I always wore thermal gloves but even so going out was painful. Eventually time and warmer weather seems to have solved it. I do hope you get an answer - a rash sounds trivial to others but it Is really debilitating.

[Dressgirl52]

hello , so sorry to hear this … I have something similar and took ages to diagnose but it seems have a lupus tumidus and am finally on hydroxychloroquine and a steroid .. my skin was such a mess on neck , face , arms looks horrendous plus a facial paniculitus .. been in this 5 months and fingers crossed it’s under control .

[Nellons in reply to Dressgirl52]

hi thank you for your reply. Hydroxychloriquin does nothing to help her makes her so unwell. Perhaps we’ll suggest she try’s steroids again. She’s under dermatologist at guys hospital in London and a rheumatologist and two and half years later still not got to the bottom of it. The sores on her head are so painful she can’t brush her hair! Just don’t know where to go next . But thank you for your help .

[Ivonfield]

hi nellons

I’ve had cutaneous lupus for over 20 years now all the creams and tablets help but it’s essential to stay out or covered up in the sun and you must when not in a flare up moisturise your skin aveeno is my chosen one at the minute but what ever works is good

If she had byopsies already and not confirmed it’s possibly something other than lupus just as horrible take lots of photos and keep a diary for the doctors because like most of us it looks better when you see a doctor hope you get sorted soon

Good luck

[Kathflan19]

Hello Nellons

Sorry to hear about your daughters ongoing situation of not finding a helpful medication. I was diagnosed with cutaneous lupus about 10 years ago at Guys. I was diagnosed by skin biopsy. As well as the terrible rash I also suffered from all the other SLE symptoms but my bloods were always negative. This led me down a very long path of my debilitating symptoms being dismissed.

I was prescribed hydroxychloroquine sulphate 10 years ago and still take it but I was told at Guys that unless I take a certain brand I might feel Ill. The brand I take has to be Zentiva as it is the exact same formula as Planquenil. If I take any other I get very ill.

hydroxychloroquine helped a tiny bit but didn’t stop my flares (rash went away when I stopped going in the sun completely and used Betnovate cream) I have suffered almost weekly from flares of fever headaches and joint pains for the past 10 years.

I was pushed from dermatology to rheumatology and no one had a solution. In the end I decided to use my savings and go private at The London Lupus Clinic. On my first appointment with Dr Arvind Kaul (rheumatologist) I was prescribed An unlicensed medication called Mepacrine.

This totally changed my quality of life. Mepacrine is not easy to get hold of and is expensive but I’ve seen information written by Guys hospital on the internet stating it’s use in combination with hydroxychloroquine.

Mepacrine is one of the original anti-malarial medicines used in the war.

Although my rash stopped being an issue years ago there is lots of literature about the benefits of Mepacrine and cutaneous lupus rashes.

You could maybe ask about it at Guys and see what they say?

I’ll have a look for the information I read and post the link back here.

I hope your daughter finds a solution soon.

Kate

[Kathflan19 in reply to Kathflan19]

I found some information on Lupus Uk you can look at

lupus.org.uk/how-is-lupus-t...

[Nellons in reply to Kathflan19]

hi Kate thank you so much for this information. We have been private already last year to London lupus clinic and they just referred us to guys. The dermatologist there we see Dr Grattan has mentioned Mepacrine actually but due to review her in May again but she has been so ill on hydroxychloriquin and has stopped taking it so I will mention about zentiva and also the mepacrine again .

[Kathflan19]

I wish you and your daughter all the best and hope you find a solution soon 😊

[Nellons in reply to Kathflan19]

thank you

[Croes]

Yes I suffer this form of lupus and at times it is very sore and miserable. My diagnosis was straight forward a biopsy and my bloods confirmed it. I am now on hydroxychloroquine which seems to work for me I take a maintenance dose and if I sense a flare coming on I up it to two tablets daily.

[Haired]

Hi, I feel so sorry for your daughter.the rash can be so sore and can feel like your legs and arms are on fire. I have Lupus & Sjogrens Dermatologist did skin biopsies and she sent me to a rheumatologist who also did biopsies which diagnosed Lupus and Sjogrens. It took a few years and many different medications including Mepacrine, Imuran, methotrexate, lots of steroids etc.

I have been on Rituximab Infusions since Jan 2021 (6 Monthly) and they have cleared up my skin nearly completely. I am also on maintenance steroid of 2.5 on e day and 5 next day. Regarding the Infusions I live in Ireland where Health system is different than in UK. We have HSE Public Health service and Private Health Cover. A lot of people pay for the Private Health cover as the waiting time to see Consultants is quicker. But it can be very expensive.

Unfortunately with Lupus & Sjogrens what works for one person may not work for another very much trial and error. I do hope they find something to help your daughter soon. X ( I thought my skin would be left marked for life but it nearly all cleared up so hang in there.)

[Cas70]

Yes, I have exactly the same - one name for it is Discoid Lupus. I have been diagnosed now for 8 years. It was the sore on my scalp that proved the Lupus. I am on Hydroxychloroquine which helps - have they not prescribed that? I have used all different lotions on my skin as they just trot out Dermovate and it was worse. I use Aveena on my body and Nivea products on my face. So it really has been trial and error. Like so many on this website I have had to fight for proper help - at 76 yrs old I have gone private as I have Sjogren’s as well. The sores you describe sound awfully like Shingles which I have permanently- Lupus is stress related so is Shingles. Ivan only suggest you find a centre of excellence like St Thomas’s and Guys - it’s at London Bridge but worth the journey. They diagnosed my friend in a day. They have a special clinic for Autoimmunity- you can tell your GP you want a referral there - they can’t refuse. It’s in the Patient’s Charter. Contact me if you need anything further and Good Luck it’s the younger women I feel sorry for.

[Nellons in reply to Cas70]

thank you for your reply. She is under Dr Grattan at Guys Hospital and her biopsies came back as inconclusive so he is a bit baffled. Hydroxychlorine makes her feel so unwell and has not helped. He did suggest mepocrin but then changed his mind. Her bloods suggest lupus but no one seems certain. We’ve been private in London lupus ctr and at our local hospital who referred us to Guys but seem to be getting no where . It’s not shingles but she does get very stressed with her job as a midwife so this probably doesn’t help. I wonder if the autoimmunity clinic is different specialist there as we were referred to dermatology?