Hi I have a diagnosis of chilblain lupus (and SLE) but the chilblain lupus is really getting me down at the mo and with it being so rare I can't find any helpful information online regarding prevention and management. The only advice is 'keep warm ' but as I live in the UK it's impossible to do so. Given I have had this throughout the summer 'keeping warm' for me means living in 30+ degrees which is just impossible in the UK. I wear gloves whenever practical but that's seldom. I have to be 'bare below the elbows' at work, I live on my own and need my hands to just simply do stuff. (Getting something out of the fridge for example can set off a Raynaud's episode). When I'm resting I'm always in thick jumpers, hood up, blankets, heat packs etc. I wear thick boot slippers all year round, have heated blanket on my bed, thermal mattress protector, 13.5 tog duvet with a blanket on top. Extra hot water bottles when it's cold. House is always heated to a min of 21 degrees yet my hands are still cold.
The lumps are painful and ugly, they make using my hands hard to do as it affects my dexterity and causes pain. My core can be warm, my body toasty but my hands are still cold which then leads to the chilblains. When they do get cold they take forever to warm up.
Does anyone have any practical, sensible advice beyond the vague and unhelpful 'keeping warm'?
Medication wise I am taking sidelifil (definitely helps with reducing Raynaud's attacks but doesn't stop my hands being cold or the CLE), hydroxy, sulfasalazine and adlimumab (in the process of switching to rituximab). I've tried topical steroids but they made my hands even more tender.
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I suffer chilblains, I hardly never have them, I find it’s good to use real wool socks and fur lined boots all winter. I Have tried heated insoles too, I had ones that charge up and last all day which helped. We now have a house with central heating so no temperature dips has helped me. We Was on an open fire! And portable heaters in old house.
My hands don’t get as bad but I always carry a power bank hand warmer, it splits in two and i can fit them in my gloves at palms.
They don’t call mine chilblain lupus but I was diagnosed lupus before this really started. I do have heated blanket on sofa and bed, heated seat in car and heat pad at work on my chair. Also hot water bottle often used and lots of fluffy socks and slippers.
I Would recommend real wool clothes defo help keeps temperature up
I don't have chilblains, but I do have raynauds and vasculitis. When I get cold, I go blue and loose my sense of touch in my hands and feet. I also have neuropathy, I don't want to list everything because I will bore myself as well as everyone else.
I've got hand warmers, silver gloves and so on. But as my skin is really bad my hands in particular are very sensitive, painful and the skin is very thin,
I purchased Heat Holders thermal joint warmers, currently £10,99
I wear these on my arms and my hands are free and warm. It seems that warming the circulation in my arms feeds into my hands beautifully.
I wish I could wear them on my knees, but my legs are too big!
I struggle will wool socks as they are hard to get with a comfort cuff and are too tight on my ankles. But warm slippers with a thick sole and warm lining make a great difference, but I see you have warm slippers already.
Hope you find something to ease your symptoms soon.
I had chilblain Lupus for the first time last year and it was shockingly bad. So much so that my consultants asked for my permission to use my case and photos in their training sessions for students.
All of this followed my Covid jab and the same happened 2 years ago after my Covid jab but on my feet.
Last year I couldn't open doors, hold cups, and if something so much as.rubbed against my hands I'd be in excruciating pain.
My youngest accidently grazed the iPad cover against my hand and the shooting pain was so much that I screamed a swear word in pain - first time ever I've sworn in front of the kids.
I also was unable to walk as my toes were covered in sores and blisters. And my heels were super painful. This was the worst time in my entire life. Even worse than when I was first diagnosed with Lupus. It felt like my life had come to an end. And that's no exaggeration.
I had infusions, blood pressure tablets, Sildanefil. But nothing was helping. Then my GP prescribed Tildiem (Diltiazem I think) and that made some welcome minor change. It might be worth discussing this with your Dr's.
Now that the weather is cold, my toes are again blistered and sore. My fingers touch wood are so far OK 🤞 But in all honesty, I'm fearing what they'll be like when it's really cold.
I hope you don't mind me replying to your comment, I just really relate to a lot of what you mentioned. Struggling to walk because of the sores on your toes. Struggling to hold things. And the story about your child accidentally grazing the iPad cover against your hand - firstly, ouch! I'm wincing even reading it. Secondly, it brought back a similar memory from a few years ago when I had a particularly nasty cluster of lumps/chilblain lesions on my fingers. I was staying in a hotel and somehow managed not only to cut myself on the tap, but to cut myself in the EXACT location of the worst lesion on my finger. I literally sliced the top of the bump on my finger right off. My goodness, the pain. I think I'd blocked out the memory until now!
I wondered if I could ask what your process was of getting diagnosed with chilblain lupus? I've seen a consultant, and the diagnosis was given as "possible chilblain lupus" - he's referred me to someone to look into it, but the wait list is a year long. I'm thinking about trying to see someone sooner if possible. Did you need to have tests/a biopsy to diagnose yours, or was that not needed since you already had a lupus diagnosis? Obviously don't feel like you have to answer!
Hi again Goldcrest, I don't mind at all. We are all here to support each other the best we can 🙂
MY gosh you sound just like me me the accidents and clumsiness😂 I've cut my finger, stubbed my toes on the bed, and the worst was totally stupidity when the piece of bread I out in the toaster was a little too small, so when it popped up, I couldn't get it out. So I decided to get it out with my fingers and touched the scolding hot inside grill. Left me with not just the blistered finger but now also a burned finger 🤦
I've seen a dermatologist, rheumatologist, and a nephrologist. All three cannot agree if it definitely IS chilblain Lupus. One has said it is. One has said it isn't. The other I have no idea what they said.
I'm seeing my dermatologist again in December so be good to get more advice.
My nephrologists are amazing. I'm currently having Belimumab infusions for this. Alas, it just isn't working. Iloprost also didn't work, but they said they may consider giving it another go. And also maybe Rituximab infusions.
I also recommend seeing your GP to seek advice on a cream called Clobetastol. It's a steroid cream so need to be careful with it. It was recommended to me but didn't work. But it could possibly work for others.
Oh and a drug called Tildiem. This I think worked a bit.
You've definitely won there with the chilblainy finger injuries - a burned and blistered finger sounds horrendous!! I'll take my tap sliced finger any day.
That sounds a bit like me, I've so far seen my GP, who had no idea what they were. She wrote to local rheumatology, who also had no idea what they were. Then I saw a different rheumatologist, who said possibly chilblain lupus (but also possibly chilblains secondary to another autoimmune condition, or chilblains secondary to potentially undiagnosed raynaud's). He said there's no point me seeing a dermatologist, because the ones on my fingers would be too awkward to biopsy. But then a different doctor I saw said I SHOULD see a dermatologist to get them biopsied, so honestly at this point I don't know what to do.
Do you see a dermatologist, rheumatologist and nephrologist all at the same hospital? Or are they all independent of each other? I'm glad you have a great nephrologist! Sorry to hear your treatment isn't working currently though. I hope with their help you manage to find something that works for you. Hopefully without having to try too many different things, as I know how frustrating that can be - trying one thing after the next without much success.
Thank you for mentioning these creams/drugs, I've made a note of them and will talk to my GP about them next time I see her. And yes, please do update us after your next appointment. I'll keep my fingers crossed for you that it goes well!
I've always said it's good to laugh - and more so appropriately when times are bad (many though understandably would disagree). I find humour gets me through life 😂
Yup, my Rhumy, Dermy, and Nephro are all at the same hospital. They're about just over and hour from my home, which is a pain, but the nephrologist and dermatologist are brilliant so I dont mind the travel. Plus I get to travel on the tube and catch up on some reading, which is great.
Be great to know if your doc prescribes the cream and medication. If they do, pls let me know if they work for you.
Agreed! Sometimes you either have to laugh or cry, and honestly crying is more effort. Not that I don't cry, but more often than not I resort to dark humour instead 😂
That's good they're all at the same hospital at least, hopefully it means you have less issues with letters getting lost and lack of communication between them etc. Ah that is a pain, but definitely worth it if they're good - if I ever find someone who knows what's causing my issues, I'm sticking with them, even if I have to travel across the country! Reading for work or pleasure? I've just got back into reading myself, after years of barely reading anything. I now have a lot of books to get through that have just been sat on my bookshelf. It's a bit slow going!
Will definitely report back if they do end up prescribing any of the medications you mentioned, or if I have any updates of note 🙂
"but more often than not I resort to dark humour instead 😂"... you and I sound rather similar 😂
Both myself and my eldest have a very similar sense of humour, much of it dark and self deprecating. Drives my wife mad, which makes it even funnier 😉 We were just discussing this over dinner tonight. I could see her face getting redder and redder 🤣
Hi - I’m coming in on this post late because I’m really intrigued by this idea of Chilblain Lupus - but also by your description of yours. I have had spells of extremely painful tiny burning blisters in my finger pads and tips. When they break they turn into petechiae-like spots and then crater. The pain is so bad I can’t type or work or do much at all with my hands without wanting to cry. My rheumatologist saw the petechiae in 2020 before I was fully diagnosed and put me straight on iloprost infusions for my Raynaud’s and Erythromelalgia combo as no other vasodilators had been tolerable. Iloprost was horrible but after day one I found I could touch type again and hold my cutlery and get my boots on, fasten clothes etc so I’ve been getting it ever since.
Prior to being definitively diagnosed with Systemic Sclerosis/ SSc last year, my main diagnosis was Overlap CTD - most like MCTD my rheumatologist felt. She is a Lupus specialist whom I’ve been really fortunate to have even though she doesn’t have other patients with SSc. My antibody is strongly associated with diffuse SSc but we kept an open mind until last year because I didn’t have the typical skin tightening in hands or face or digital ulcers. And I was already diagnosed with seronegative Sjogren’s so she said we must hope it stayed at this CTD /MCTD overlap as apparently all others have a better prognosis than SSc. Luckily for me even prior to my SSc being diagnosed and she was already up for trying me on various treatments from Mycophenolate to IVIG to iloprost and now Rituximab.
Now I’m reading this post and replies such as yours and wondering if my rheumatologist perhaps recognised this as chilblain Lupus. It certainly never corresponded with the digital ulcers of SSc. I think I recall that she felt it might be a type of vasculitis at the time. Anyway I now get one day a month of iloprost through a portacth. I’m also on mycophenolate and newly getting Rituximab but the latter hasn’t done much for me so far. I do sometimes still find typing very sore and have to dig out my old stylus again to for touch screen. Other things I use for my Erythromelalgia is Dermacool cream 5% and lidocaine 5% ointment. Staying warm is another matter entirely as iloprost doesn’t prevent Raynauds attacks - it just mitigates the damage they can do.
OldTed60 I'm glad you stumbled across this post - after you commented on my post the other day I was looking at your other posts/comments as it sounded like we had some overlapping symptoms. I saw your photo and description of your possible digital ulcer, and it reminded me of the lesions I get on my fingers. Yours sound different to mine in that mine don't crater, but they do get tiny red dots in the centre of them as they get "older" (after a week or more), so could look like petechiae/vasculitis. And they are painful. SurferGuy is probably more help than me with this as I don't have a definitive diagnosis for mine yet. It's certainly an interesting possibility, if yours don't fit with typical sclerosis ulcers.
Thanks - yes I did find it interesting to learn a bit more. For a while my main systemic autoimmune was RA and then became Sjogren's (both seronegative) but somehow rheumatologists all failed to pick up that I'm hypermobile with likely MCAS. So they blamed everything on my autoimmune disease whereas I blamed on dyshidrotic eczema and allergies (MCAS) which I suffered from for many years. Then I saw the UK Scleroderma expert last year and he confirmed unequivocally that my main disease is systemic sclerosis but said this had presented differently due to me having very hypermobile skin. A geneticist explained to me that Erythromelalgia with small fibre neuropathy is commonly part of the EDS/ MCAS family. The Scleroderma prof said that that this historic predisposition to allergies is strongly related to my rare Scleroderma antibody. I didn't show him the fingertip petechiae photos but I described how they had disappeared overnight along with the pain after day 1 of Iloprost and he said this sounded like tiny calcium deposits with some kind of vasculitis - both common findings in Systemic Sclerosis. However as I have some signs and symptoms pointing more to Lupus and Myositis, all of my drs agree that it's likely that I have a good sprinkling of all of these systemic autoimmune diseases
As you say, so many of these things overlap or are in some way linked to each other. Lots of people I've spoken to with Erythromelalgia either have autonomic dysfunction/small fibre neuropathy, some kind of autoimmune issue, or both. And as you mention, a disproportionate amount are hypermobile/have EDS. I'm glad Iloprost helped, especially so quickly. I do find it interesting that Iloprost (and a few other medications) can help Raynaud's but also sometimes Erythromelalgia. On paper the two conditions sound like complete opposites to one another, but in reality they probably share some mechanisms.
I really wish I had some helpful advice, but honestly, it's just a nightmare. Like you say, in the UK it's pretty impossible to stay warm all the time, especially if you also have Raynaud's (I'm lucky in that I don't). I do have erythromelalgia though, so I spend most of my days trying to stay cool, which then makes my chilblains/chilblain-like lesions worse, so I can't win.
I'm currently trying to find out if I have chilblain lupus, I've been referred but there's a year waiting list, so I'm not yet assuming that's what I have. But I really relate to what you say in your post, about the lumps being painful and making it hard to use your hands. When I get them on the creases of my fingers (like the creases where your knuckles bend, but on the palm side of your hands/fingers if that makes sense) it's awful, because then it's hard to bend your fingers/use your hands. Then when you have them on your fingertips, it's hard to pick anything up. I remember struggling to write at school when I was younger, because the pen would press against them and hurt.
Anyway, I really wish I could help, but mostly I just wanted to say I'm sorry you're suffering, and I totally empathise with how horrible they are (and yours sound much worse than mine). I try to keep the house an even/constant temperature, mainly for my EM, but I think it helps the chilblain lesions too. It doesn't help as soon as you have to leave the house though, especially in the colder months. Gloves aren't very practical as you say, or at least not always. I've found that if my hands are still (e.g. sat reading and holding a book) they get cold easily and I get the chilblains worse/more frequently. So now I try to keep my hands busy when I feel they're starting to get cold, or I get up and move around a bit before going back to what I was doing. I'm not sure why it helps, maybe improving blood flow, which warms them up? Honestly no idea, but it has helped me a bit.
Hi DC, oh I feel your pain. The ‘keep warm’ advice was useless to me too as I have excellent circulation; feeling cold was not the problem! Anyway, hydroxy took care of most of the sores for me. I am currently taking 400mg.
The only topical cream that helped me (I tried sooo many variants) was a haemorrhoid cream called Anusol (that’s it’s name in Australia, it might be under a different brand name in the UK). It works wonders on my sores, especially when they first break out and give me the unbearable itchy, burning pain!
The other thing I did was went to see a dermatologist for proper diagnosis. I have lupus and APS, and when my immunologist saw my sores, he diagnosed me with chillblains too, but I just wasn’t convinced—it didn’t line up with my excellent circulation. So I saw the dermatologist who told me to come back when I had a fresh sore. I did so, and he took a biopsy. Ended up diagnosing me with vasculitis. So yes, it can help to have the right diagnosis.
Please keep us posted and let us know how you get on. All the best to you 🌻🌈
Hello dear i am so sorry you are suffering but as if i wrote this! I am the same age and suffering with feet and hands chilblains.. same stupid advice of keep warm. I am not taking exactly your meds. But i was described nifedipine and it looks like they are improving. So try to ask your rheumatologist about it
Hi All, I hope you're all keeping as well as can be ❤️
I promised a little update after my dermatalogy appointment with the hope that any advice I'm given might be beneficial to others. So here it is....
I had my appointment today, and it couldn't have come at a better time as my feet are absolutely blistered, red and sore as heck!
As I work permanently from home, today was my first day out in the proper cold, and with no exaggeration at all, within 5 minutes the skin on my middle finger started cracking and peeling. And the feet were sore to the point where I hobbled all the way to the hospital.
After waiting almost 2 hours, it was a little frustrating that the consultation felt rather rushed.
Saw a junior Dr first followed by the consultant. And it was so rushed I totally forgot to ask some key questions, even though I'd written them down!
But it's cool, will email them with some pics and ask.
I was advised to increase my Sildanefil from 25mg x3 a day to 75mg x3 a day 😳 I get head aches with Sildanefil so not too pleased, but am desperate so will mix with paracetamol. Is anyone else taking such a high dose? If so, did it help at all?
Now for something new which I hope might help others. I was also prescribed Fluoxetine, which is an anti-depressant but also helps blood circulate around the body.
Advice is to try the 75mg Sildanefil first, and if they don't do the job, move onto Fluoxetine.
Whether the Fluoxetine works or not for me, this could be something you guys can take to your Dr's in the hope it might work for you.
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i am so sorry you are suffering but as if i wrote this! I am the same age and suffering with feet and hands chilblains.. same stupid advice of keep warm. I am not taking exactly your meds. But i was described nifedipine and it looks like they are improving. So try to ask your rheumatologist about it
Chilblain lupus erthematosus 
COLD feet
Chilblain Lupus (Erythromyalgia?)
What on earth is Chilblains Lupus?
WHAT LED TO YOUR LUPUS DIAGNOSIS?
