Heliotrope Rash

Overview

A heliotrope rash is a reddish-purple (violet or lilac) rash that usually appears on the upper eyelids and the skin around the eyes. It is named after the heliotrope flower, which has purple-blue petals. It is not an infection and you cannot catch it from anyone. The rash is often the first sign of a condition called dermatomyositis (say: der-ma-toe-my-oh-SIGH-tis), which is where the body's immune system mistakenly attacks the skin and muscles. But the rash can have other causes too, and having it does not mean you definitely have dermatomyositis. Only a doctor can work that out, usually with some simple tests.

No, it is uncommon. Dermatomyositis, the condition most often linked to this rash, is rare. So if you have this rash, you are not alone in needing answers, but it is not a everyday skin problem either.

It can affect children and adults. In adults, it is seen most often in women between about 30 and 60 years old. In children it is called juvenile dermatomyositis and usually starts between the ages of 5 and 10. In older adults, the rash may be the main or only sign, and doctors tend to look a bit more carefully for other health conditions at the same time.

Symptoms

Common symptoms

• A violet or lilac-coloured rash on the upper eyelids, usually on both sides
• Mild swelling or puffiness around the eyes
• The rash may spread to the cheeks, forehead, temples or the area around the nose
• Sun-exposed skin may sting, burn or feel tender
• Raised red-purple bumps over the knuckles, elbows or knees (doctors call these Gottron's papules)
• A red or violet rash across the shoulders, upper back or chest (sometimes called the shawl or V sign)
• Redness or ragged cuticles around the fingernails
• Muscle weakness, such as trouble climbing stairs, lifting your arms above your head, or standing up from a chair
• Feeling unusually tired, or aching joints
• Fingers that turn white, then blue, in the cold (Raynaud's)
• Trouble swallowing, or a hoarse voice, in some people

Symptoms in children

• A violet rash around the eyes and over the knuckles, elbows and knees
• Muscle weakness that can make climbing stairs or getting up from the floor hard
• Being more tired, clingy or irritable than usual
• Tummy aches
• Hard lumps under the skin (called calcinosis) in some children
• Trouble swallowing or a change in speech in more serious cases

Symptoms in older adults

• The rash may be the main or only sign, with little or no muscle weakness
• Skin may be more sensitive to sun and to skin products
• Tiredness that is easy to put down to age or other conditions
• Other medicines and health conditions may need to be considered together with the rash

Causes

Main causes

• In many people the rash is linked to dermatomyositis, an autoimmune condition where the immune system attacks skin and muscle by mistake
• Sometimes the rash appears with other autoimmune conditions that affect connective tissue, such as lupus or mixed connective tissue disease
• Rarely, a reaction to a medicine or another skin condition can look similar
• In some adults, dermatomyositis can be linked to another underlying health problem, including cancer, which is why doctors sometimes suggest checks

Risk factors

• Being a woman between about 30 and 60 years old
• Being a child between about 5 and 10 years old (juvenile form)
• Having another autoimmune or connective tissue condition
• A family history of autoimmune conditions
• Smoking, which is linked to a higher risk of some autoimmune and lung problems

When to see a doctor

See a doctor urgently if:

• You have trouble swallowing, a hoarse voice, or you are choking on food or drink
• You feel breathless, or you have a new cough that will not go away
• Muscle weakness is getting worse quickly
• The rash comes with fever, blistering, or spreads rapidly
• You have black or bloody stools, or you are coughing up blood

Book a routine appointment if:

• You notice a violet or lilac rash on your eyelids or around your eyes
• A rash around your eyes does not fade with your usual creams
• The rash keeps coming back after sun exposure
• You have the rash along with aching muscles, tiredness, or trouble with stairs or lifting
• Your fingers or toes change colour in the cold

Diagnosis

There is no single test for this rash. Your doctor will start by talking with you and looking closely at your skin, eyelids and hands. They will ask about sun sensitivity, muscle weakness, swallowing, tiredness and your general health. Based on what they find, they may arrange blood tests and refer you to a skin specialist (dermatologist) or a joint and muscle specialist (rheumatologist).

Tests that may be done

• Blood tests to look for muscle enzymes and immune system markers (antibodies)
• A small skin sample (biopsy) taken with a tiny numbing injection and checked under a microscope
• Muscle tests such as an electrical muscle tracing or a scan, if weakness is present
• Lung tests, such as a chest X-ray or breathing tests, if there are any chest symptoms
• Nail-fold examination with a magnifier to look at tiny blood vessels
• In adults, checks for other underlying conditions, which may include blood tests, scans, and the cancer screening tests that are right for your age

What to expect at your appointment

It can take a few visits and a few weeks to get answers, which is normal and frustrating in equal measure. Write down your symptoms and questions before each appointment, and take someone with you if that helps. Ask your doctor to explain anything that is unclear, and ask what the next step will be.

Treatment

The aim of treatment is to calm the immune system, protect the skin from sunlight, keep muscles strong, and keep a check on the rest of your health. Treatment is tailored to you and depends on what the tests show and how your skin and muscles are affected. Some people need only skin care and monitoring; others need stronger treatment from a specialist.

Self-care at home

• Protect your skin from the sun and strong daylight every day - use a high-factor sunscreen, a wide-brimmed hat and shade, especially in the middle of the day
• Use gentle, unperfumed moisturiser and avoid harsh soaps or scrubs on the face
• Pace yourself and rest when your muscles feel tired
• Keep gently active rather than stopping completely - short, regular walks help
• Stop smoking if you smoke, and ask for help with this
• Keep a simple diary of flares, sun exposure and how you feel, to share with your doctor

Medical treatments

Specialists usually prescribe medicines that calm the immune system, such as steroid-type medicines or other drugs that dampen immune activity, along with creams or ointments for the skin itself. Physiotherapy helps keep muscles working and prevents stiffness. Which treatment you are offered, and for how long, is decided by your specialist based on your test results and how you respond. Never start, stop or change any medicine without talking to your doctor or pharmacist.

When is surgery considered?

Surgery is not used to treat the rash itself. It may occasionally be considered for hard lumps of calcium that form under the skin in some people, or if doctors find another condition that needs an operation. Your specialist would discuss this with you if it applied to you.

Living with this condition

Living with a visible rash on your face can feel like a lot at first. Daily sun protection becomes a habit fairly quickly. Many people find it helps to plan heavier tasks for their better days, to keep appointments in a diary, and to tell a couple of trusted people what is going on so they can help when energy dips. Flares can come and go, and having a simple plan with your doctor for what to do when one starts makes it easier to manage.

Lifestyle tips

• Sunscreen, shade and a hat every day, even when it is cloudy
• Gentle, regular movement rather than bursts of intense exercise
• Good sleep and regular meals
• Stop smoking and keep alcohol within recommended limits
• Manage stress where you can - relaxation, breathing exercises or talking things through
• Avoid harsh skincare and treat your skin gently

Diet and exercise

There is no special diet that cures this rash, but a balanced diet with plenty of vegetables, fruit, wholegrains and protein supports your general health and energy. Gentle exercise such as walking, stretching, swimming or physiotherapy-led movements helps keep muscles working without straining them. Build up slowly, and on days when muscles ache, rest more and do less. Your physiotherapist or doctor can help you set a plan that fits you.

Mental health and emotional wellbeing

A rash on the face can affect confidence, and long-term conditions can bring low mood, worry or frustration. These feelings are valid and worth mentioning to your doctor. If you ever feel you cannot cope, or you have thoughts of harming yourself, please reach out for crisis support straight away - contact your local emergency number or a crisis line in your country, or speak to a trusted person who can stay with you. You do not have to manage alone.

Prevention

You cannot prevent the underlying condition from starting, and it is not caused by anything you did. You can, however, reduce flares and protect your skin by keeping out of strong sun, wearing a hat and sunscreen, not smoking, and getting symptoms checked early so treatment can start promptly.

Screening programmes

If you are an adult with this rash, your doctor may suggest checks for other health conditions, including the routine cancer screening tests that are right for your age and sex. This is a precaution, not a sign that something is definitely wrong, and your doctor will explain what is being looked for and why.

Complications

If left untreated

• Muscle weakness that gets worse over time and makes everyday tasks harder
• Swallowing problems, which can lead to choking or chest infections
• Lung inflammation or scarring in some people
• Hard lumps of calcium under the skin, and tight joints or muscles
• Long-lasting skin colour change or thinning of the skin
• An underlying health condition going unnoticed because the rash was not checked

Long-term outlook

The outlook is often good, particularly when the condition is recognised and treated early. Skin changes usually improve with treatment and sun protection, muscle strength can be rebuilt with physiotherapy, and many people go into long periods with few or no symptoms. Some people need ongoing treatment and check-ups, and a few need more intensive care. Your specialist team will tell you what to expect in your situation, and it is always fair to ask them about your outlook directly.

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