What on earth is Chilblains Lupus?

[Brychni]

What I do know is it shouldn't be confused with lupus pernio but it is, confusingly, also called pernio or perniosis.After a lot of googling I think that my worsening/changing Raynaud's sounds like Chilblains Lupus. I'm interested in hearing from anyone who has had this on their way to being diagnosed with SLE. All the literature seems to say that people with Raynaud's and certain antibodies (me) who start having the symptoms on their fingers and toes: tough skin, red spots, chilblains, deep sores etc, go on to develop SLE.

About a year and a half ago I discovered that Lupus had been added to my list of issues and I didn't even bother asking about it at my last appointment never had any obvious symptoms, certainly not one's that couldn't be attributed to something else.

Even though the weather is becoming more mild, my fear of cold things is worse than ever. It's not so much the white fingers but now I get blue, purple fingers and the very painful sores on tip and side of my index finger and a couple of toes. Before I got the sores, I had a lot of itching on the tops of first 2 fingers, with a little rash of petechiae and they were swollen and puffy (they pretty much swell every day). I

The sore seems to have bubbled and cracked and now there's a red spot in it's place. Before that started I noticed that the skin on those fingertips were really hard.

Putting on shoes even a tiny bit colder than my feet results in instant tingling, cold feet all day and red/purple spots.

I've also noticed that my cheeks become uncharacteristically red, really red when I'm in the car and it's sunny and warm. They take ages to calm down and sometimes leave blotches which slowly fade. I've never had this in my life 😕 and I use a factor 50 every day. This also has started happening when I come in from the cold into a warm room, they just go really red and hot.

I've got loads of pictures of the fingers if anyone wants to see them 😅

[soul22]

Hi nice to meet you ☺️

Firstly are you re applying factor 50 every 2-3 hours

I react similar to you sun, indoors lights if to close heat.

I'd get rashes checked out ,mine are lupus related no photos I'm afraid.

Yes share photos it helps others see

Going red and hot is maybe Raynaud's reaction not sure.

Not medic can only share my experience lupus, Raynaud's.

Hope bit helpful

[Brychni in reply to soul22]

Hi Soul22 - I think that the red cheeks is more to do with my cheeks than the sun - if you know what I mean! It almost feels like Raynaud's on my cheeks - if that is even a thing.

I thrive when it's warm and sunny. The reason I wear factor 50 is that I have an actinic keratosis on my nose which is being treated. Well not only for that reason; I've been wearing it for a few years now entirely for vanity!

I have a rhuematology appointment in May and I think this time I am going to ask some questions.

[soul22 in reply to Brychni]

Okay

[BukkyApampa]

Thank Brychni, you’ve just described everything I experience with chillbain, I was first diagnosed with SLE and few years after when I started experiencing what you described in my fingers and toes came the 2nd diagnosis, mine are now quite extensive so that I regularly get infections in the fingers, during the winter they constantly throb and I wear gloves 24/7.

I haven’t found any meds that work besides upping my steroid doses in the winter, I’ve been prescribed nicotinamide, coracten, losartan e.t.c

What do you use? What works if any?

[Brychni in reply to BukkyApampa]

Blimey. How did it start? With just one or two fingers? It's only 2 with me at the moment. The white finger thing used to be the middle three on both hands but this new thing is index fingers and really tough skin on the thumb. I think the index finger is healing now but the skin is hard, thick and solid. I can't peel or pick the red bit off, even though it's looking a bit like it has scabbed. (Sorry, bit yuk!)

[Brychni in reply to BukkyApampa]

Poor you. It sounds like hell. I forgot to say that because of Raynaud's I have always used thick occlusive hand creams and lanolin ointment on my fingertips which I apply several times a day. Clearly that's powerless against whatever it is I'm getting on my fingers now. I'm on hydroxychloroquine which I believe helped with Raynaud's so I don't know why this is happening now. Do you find that dampness brings it on?

[BukkyApampa in reply to Brychni]

Yes definitely, the cold weather and washing up makes it worse, there are days I have to stay away from water completely.

[Brychni in reply to BukkyApampa]

Hi B, so was it just one or two fingers when it first happened? How quickly did it progress?

[BukkyApampa in reply to Brychni]

Hi, it started with both pinky fingers and then all of them, I’d say the progression was for about 4 years, I was seeing a dermatologist which was not very helpful as diagnosed discoid and gave me steroid creams, I had a change in rheumatologist in the 5th year and you took one look, diagnosed Chilbains and gave me losartan which is now helping but unfortunately the damage to all 10 fingers and part of my feet is extensive. I tried to share a pic but this app rejected.

[Brychni in reply to BukkyApampa]

It sounds like it was quite gradual with you. My coldness reactions have been sporadic. The worst was in my nipples but only during my three pregnancies. Then tge white fingers thing started when I was 40/41. That got progressively worse over a few years. I didn't suffer any pain during that time. Only after I started hydroxychloroquine did I experience the horror of the blood coming back into my fingers BUT it only happened 2 or 3 times. Made me cry though. In addition to my new symptoms I've also had the nipple thing again which really worries me. And no I'm not pregnant 🤣.

[Diagnosis_Collector]

Appointment with a dermatologist to discuss my hands were I got diagnosed with chilblain lupus, a week later my rheumatologist changed my diagnosis from RA to lupus. Like you hands are very sore and sensitive, lumps everywhere, my fingers look like knarly bamboo. Very sensitive to the cold. Nifedapine has helped. My feet aren't too bad just one sore. I just hate how ugly my hands look.

Blast a hairdryer into your shoes before putting them on 😉

Colour photo showing chilblain lupus

[MusicalFurbaby]

Hi Brychni, I started getting the chillblain-like sores after my lupus diagnosis. They started on my toes and only in the cold weather, but now they appear year-round on both my fingers and toes, sometimes on my heels and soles of my feet too. My rheumy thought they were chillblains, but then I saw a dermatologist who took a biopsy of a fresh sore and diagnosed me with vasculitis. I also have the anticariolipin antibodies. The hydroxy manages 90% of the sores which is great, and any breakthrough sores with their characteristic itching are managed with a topical haemorrhoid cream called Anusol. It’s the only cream that’s ever helped!