Imagine this: you’ve come in from a chilly day, maybe a bit damp, and your fingers and toes are aching. Later, you notice these tender, itchy, reddish-purple patches showing up. Annoying, right? Sometimes, these kinds of skin changes, especially when they pop up after you’ve been cold, can be a sign of something called Chilblain Lupus. It’s a bit of a mouthful, I know. Essentially, it’s an uncommon type of lupus that mostly shows up on your skin – what we doctors call cutaneous lupus erythematosus (CLE).
This isn’t your everyday frostnip. With Chilblain Lupus, these aren’t just temporary discomforts; they’re actual sores or discolored patches, often painful, that either form or get worse when your skin gets cold. The name itself, “chilblain,” actually comes from old words meaning “cold” and “sore.” Makes sense, doesn’t it? Many folks who get this already have a diagnosis of the more common systemic lupus erythematosus (SLE), where lupus affects more of the body. But sometimes, it just appears out of the blue. Either way, it can really be bothersome. If you’re seeing itchy, raised patches, particularly on your fingers or toes, it’s definitely worth a chat with us.
What Does Chilblain Lupus Look and Feel Like?
When we talk about Chilblain Lupus, the main thing you’d notice are those skin changes. It’s your body’s way of reacting to the cold, but in a more intense way than usual.
Common Signs to Watch For
These sores and patches usually appear on your:
- Fingers
- Toes
- Heels
- Soles of your feet
Sometimes, though less often, you might see them on the palms of your hands, your knees, nose, or even your ears. And typically, they really flare up in cold, damp weather.
Other things you might experience with Chilblain Lupus include:
- Blisters or even ulcers (open sores that can happen if blood flow isn’t great)
- Depigmentation: Patches of skin might lighten or lose their usual color.
- Heel fissures: Those deep, painful cracks you can get on your heels.
- Hyperkeratosis: This just means the skin in the affected area can become thicker.
- Raynaud’s phenomenon: This is when your fingers and toes feel numb and cold in response to cold temperatures or stress, and the blood flow is temporarily restricted. It’s a common partner to chilblains.
Why Does Chilblain Lupus Happen?
This is one of those things where we don’t always have a single, straightforward answer. Chilblain Lupus can be something you inherit – a genetic thing – or it can just show up later in life, what we call sporadic.
If it’s sporadic, meaning it develops in adulthood, we’re still figuring out the exact “why.” It just… happens.
For inherited Chilblain Lupus, there’s usually a change, or a variant, in specific genes. Two genes we often see involved are called TREX1 (this one helps with DNA repair) and SAMHD1 (this one has a role in how your immune system responds). If there’s a family history, or if it shows up in childhood, these gene changes are often the culprits.
Are Some People More at Risk?
Anyone can get Chilblain Lupus, but it does seem to be more common in adults. And, as you’d expect, living in a cold, wet climate can make you more prone to it.
There are also a few conditions that might increase the chances:
- Anorexia nervosa: This is a serious eating disorder.
- Intestinal lymphoma: A rare cancer of the lymph system that starts in the small bowel.
- Pregnancy: Sometimes the changes during pregnancy can play a role.
What About Complications?
If Chilblain Lupus isn’t managed, those skin lesions can sometimes get infected. We see a higher risk of bacterial skin infections, like cellulitis, in people with this condition.
Also, if you have Chilblain Lupus but haven’t been diagnosed with systemic lupus erythematosus (SLE), there’s a chance it could develop later on. About 18% of people who develop sporadic chilblain lupus (not the genetic kind) may go on to develop SLE.
How Do We Figure Out If It’s Chilblain Lupus?
If you come to see me, or if I refer you to a specialist like a dermatologist (a skin doctor) or a rheumatologist (a doctor who specializes in joint and autoimmune conditions), we’ll start by talking about your symptoms and looking closely at your skin.
The main test we often use to be sure is a skin biopsy. It sounds a bit scary, but it’s usually a very quick and simple procedure.
- We’ll take a tiny sample of the affected skin.
- This sample then goes to a lab.
- There, a pathologist (a doctor who looks at tissues under a microscope) will examine it.
This close-up look helps us see if the changes in your skin are due to Chilblain Lupus or something else.
Managing and Treating Chilblain Lupus
The good news is, we have ways to manage Chilblain Lupus.
What Can You Do?
For milder symptoms, the biggest thing is protecting yourself from the cold. Simple, but so important. And if you smoke, we’ll really encourage you to quit. Smoking narrows your blood vessels, and that can make Chilblain Lupus symptoms much worse.
Medical Treatments We Might Suggest
If things are more moderate or severe, I might prescribe some medications. These can include:
- Antibiotics: If there’s a skin infection, something like dicloxacillin or erythromycin can clear it up.
- Antimalarial agents: Medications like hydroxychloroquine (Plaquenil®) might sound odd, but they’re actually very helpful in lupus for fighting fatigue, reducing inflammation, and easing joint pain.
- Calcineurin inhibitors: Creams or ointments like tacrolimus (Prograf™) or pills like mycophenolate mofetil (CellCept®) can help calm down the immune system’s response and reduce inflammation.
- Calcium channel blockers: Medications like nifedipine (Adalat®) help your blood vessels open up, improving circulation to those cold-sensitive areas.
- Steroid ointments: Creams like fluocinolone acetonide (Synalar®) or hydrocortisone butyrate (Locoid®) can be applied directly to the sores to decrease swelling and inflammation.
- Systemic steroids: Pills like prednisone (Deltasone®) are strong anti-inflammatories that can reduce swelling and inflammation throughout the body. We use these carefully due to potential side effects.
In very rare cases, if sores are really problematic, surgery might be an option. This could involve removing the chilblain sores and sometimes doing a skin graft, where healthy skin from another part of your body is used to cover the area.
We’ll always talk through all the options and figure out what’s best for you.
When Should You Come See Us?
If you start noticing those red or purple, itchy, or painful sores on your fingers, heels, soles, or toes, especially if they seem linked to cold exposure, please make an appointment. It’s always better to get things checked out.
You might want to ask:
- What do you think is causing these skin issues?
- Could this be related to systemic lupus?
- What can I do to prevent these sores from coming back?
- How can I best treat the sores I have now?
What to Expect Long-Term
Chilblain Lupus is generally a lifelong condition. But, and this is a big but, with the right treatment and by taking good care to protect yourself from the cold, many people manage their symptoms really well. It’s about learning what your triggers are and how to best look after your skin.
Keeping Chilblain Lupus Flares at Bay: Prevention Tips
While you can’t always prevent Chilblain Lupus from starting, especially if it’s genetic, you can do a lot to reduce flare-ups by protecting yourself from cold temperatures. Think about:
- Regular physical activity: This helps improve your blood flow and keeps your body temperature regulated.
- Warm environments: Make sure your home and workplace are well-insulated and heated.
- Warm soaks: Soaking your hands or feet in warm (not hot!) water a few times a day can be soothing.
- Gradual warming: If your hands or feet do get cold, warm them up slowly. Don’t blast them with heat.
- Dress warmly: This is key! Wear thick wool socks, warm gloves or mittens, and well-insulated shoes whenever you’re heading out into the cold. Every little bit helps.
Take-Home Message: Understanding Chilblain Lupus
Here’s a quick rundown of what we’ve talked about:
- Chilblain Lupus causes painful, discolored skin sores, usually on fingers, toes, heels, or soles, triggered by cold.
- It can be inherited or appear sporadically, sometimes linked to systemic lupus erythematosus (SLE).
- Diagnosis often involves a skin biopsy.
- Treatment focuses on cold protection, quitting smoking, and medications like steroid creams, antimalarials, or drugs to improve circulation.
- While lifelong, symptoms of Chilblain Lupus can often be well-managed with proper care and avoiding cold triggers.
You’re not alone in figuring this out. We’re here to help you understand and manage it.
