Hair loss can be one of the first symptoms of lupus. But lupus is a notoriously difficult condition to diagnose – and the ways in which it can lead to hair loss are varied.
On this page I’ll take a look at exactly what lupus is, what the most common symptoms are, the types of hair loss it can cause, and how it is treated.
Note: this information is given for guidance purposes only and does NOT constitute medical advice. You should always discuss any concerns you have regarding your health with a qualified medical professional.
What Is Lupus?
Lupus is an autoimmune disease.
Ordinarily, the immune system protects us from germs, bacteria and viruses by producing antibodies. With an autoimmune condition, your body cannot tell the difference between these unwelcome invaders and your own healthy tissues. So the immune system starts making antibodies that attack your tissues.
This causes a variety of symptoms, including pain, inflammation and tissue damage.
There are various kinds of lupus.
- Systemic lupus erythematosus (SLE) is the most common type and affects multiple organs in the body.
- Subacute cutaneous erythematosus causes inflammation and sores on skin that is exposed to the sun.
- Discoid lupus erythematosus causes a chronic rash on the skin.
- Drug induced lupus can be triggered by certain medications.
Cutaneous and discoid lupus do not affect the health of any bodily organs beside the skin. Skin lupus does not necessarily progress into SLE, with only around 10% of sufferers later developing lupus in other organ systems.
What Are the Symptoms of Lupus?
As I mentioned earlier, hair loss can be one of the first symptoms, and approximately 50% of lupus sufferers may experience it to some degree.
Other symptoms of lupus include:
- extreme fatigue
- rash or redness on face
- photosensitivity (sensitivity to the sun)
- pain or swelling in the joints
- chest pain upon breathing
- swollen glands
- swelling around the eyes
- swollen legs
- purple or very pale extremities (fingers and toes)
- ulcers around the nose or mouth
How Does Lupus Cause Hair Loss?
There are a number of ways in which lupus can have an effect on the hair.
With systemic lupus (SLE)…
the immune system can actually destroy hair follicles.
The hair might become thinner all over, or fall out in clumps.
Some people experience hair loss from their eyebrows and eyelashes, or elsewhere on the body.
With skin lupus…
rashes on the skin can cause the hair to fall out. One form of skin lupus – discoid lupus – can cause a thick, scaly red rash, typically on the scalp, face and ears. This can actually scar the hair follicles to the point where they can no longer produce hair.
It’s important for lupus sufferers to seek immediate medical advice in a situation like this, to prevent permanent hair loss.
Some people find themselves losing their hair thanks to the medication they’ve been given to treat their lupus, rather than from the disease itself. Examples include steroids like prednisone and immune system suppressants, which seem to trigger hair loss in some people.
It’s not just hair LOSS that can be a symptom of lupus!
Some people just find that the texture of their hair changes quite significantly.
In some cases, it becomes very brittle and grows poorly. It can become so fragile that it starts to break, sometimes causing a ‘rugged’ appearance characteristic of the condition, known as ‘lupus hair’.
How Is Lupus Diagnosed?
Unfortunately, lupus is one of those diseases that difficult to diagnose because there is no one test that can tell doctors conclusively whether or not you have it.
This means that some people go a long time without finding out just what’s wrong with them, or receiving the treatment they need.
There are “11 Criteria of Lupus” devised by the American College of Rheumatology that doctors use to help them diagnose the condition.
To decide whether or not someone has lupus, doctors look for at least 4 of the criteria to be present.
- A malar rash (a rash across the nose and cheeks which is shaped like a butterfly)
- A discoid rash (scaly, raised, red patches on the skin)
- Sensitivity to sunlight, resulting in a rash
- Ulcers around the nose or mouth
- Arthritis in at least 2 joints
- Indication of inflammation of the lining around the lungs or the heart
- Psychosis or seizures
- Excessive protein in the urine, indicating a kidney disorder
- Disorders of the blood
- The presence of antinuclear bodies (determined by an ANA test)
- Other disorders of the immune system
If You Think You May Have Lupus…
… Here’s a useful table from me National Institute of Arthritis and Musculoskeletal and Skin Diseases, courtesy of Womenshealth.gov
You can complete this and take it to your doctor, to assist with a potential lupus diagnosis.
Do seek a second opinion if you feel your concerns are not being taken seriously – an early diagnosis may prevent or reduce any subsequent hair loss.
Click on the image below for a printable version.
Who Gets Lupus and What Causes It?
Lupus most affects young women and often starts somewhere between the ages of 15 and 44. It affects women of Asian, Latino, African American and Native American descent more than Caucasian.
It is not always possible to pinpoint the cause, though in a few cases it is triggered by medication and in around 10% of cases it’s hereditary.
Lupus is NOT contagious.
How Is Lupus Treated?
Because it’s such a complex condition, treatment for lupus varies quite a bit from person to person.
It’s usually treated with steroids, which can control inflammation, and immunosuppressives, to limit the activity of the immune system.
As I mentioned earlier, hair loss can be an unfortunate side-effect of these medications.
Lupus Hair Loss – Will It Grow Back?
Because there are different causes of the hair loss, the answer to this question is ‘it depends’.
Systemic lupus tends to cause ‘flares’ – in other words, there are times when the symptoms are worse than others. During these flares, the hair loss can be heartbreakingly dramatic.
But the good news is that hair often grows back once treatment is received, although it can be up to 6 months before things really seem back to normal.
With skin lupus, the hair loss can be permanent if the hair follicles themselves have been scarred. This is why it’s so important to seek immediate treatment if a rash is present.
If your hair loss is caused by the lupus medication (or other medication), the hair will usually grow back when the medication is stopped.
How to Prevent Lupus Hair Loss
Seek immediate advice from your doctor if you notice a rash developing. Early treatment can prevent scarring.
Speak to your doctor about altering your dosage or changing your medication if it seems that the medication is causing your hair loss. Do bear in mind, though, that your doctor may not recommend this until your lupus is well under control.
Try to avoid ‘flares’ of systemic lupus by avoiding your ‘triggers’. It’s a good idea to keep a diary to help you work out what your triggers may be.
- Try to keep your stress levels low.
- Avoid the sun, especially between 10 and 4 PM
- Get plenty of rest.
- Avoid exposure to halogen lights or fluorescent lights.
- Make sure any infections are treated promptly.
Don’t necessarily assume your hair loss is related to your lupus.
Hair loss has lots of other causes – please see this page for more information.
How to Disguise Your Hair Loss and Look after Fragile Hair
- Consider a shorter hairstyle, so the weight of your hair does not flatten your roots against your scalp (which makes the bald patches more obvious).
- Color your hair so it is lighter, creating less of a contrast between dark hair and a pale scalp. (This may not be suitable for everyone, particularly if the hair is very fragile).
- Consider hair extensions, a ‘topper’, or partial wig if the hair loss is severe. Avoid any hair pieces that need chemicals or glue to attach them.
- Decorate your hair with trendy hair wraps, scarves or bandanas. Type ‘how to tie a head scarf’ into Youtube and you’ll find masses of video tutorials to help you discover a look that suits YOU.
- Use a hair volumizer to add some ‘bounce’. I also find that dry shampoo is great for adding a little volume.
- Look after fragile hair by avoiding heat as much as possible and using a gentle shampoo. These hair loss shampoos contain many nourishing ingredients that are kind to the hair.
- Considering taking biotin supplements, which some women find helpful and are occasionally recommended by dermatologists. Saw palmetto is another popular remedy. Please remember to speak to your doctor before taking any supplements.
- Eat foods known to encourage healthy hair growth (you’ll find lots listed here).
- Invest in silk or satin pillowcases
which are very gentle to the hair and help prevent breakage (there are said to prevent wrinkles too!).
- Invest in silk or satin pillowcases
- Use organic, unrefined coconut oil
to soften brittle hair. It’s one of the few oils scientifically proven to actually penetrate the hair shaft shaft.
- Avoid over-the-counter hair loss treatments or at least check with your doctor before using them. They are not always recommended for lupus sufferers.
- If your hair loss is caused by scarring and likely to be permanent, read question 3 on this page by Dr David Fiorentino of the Lupus Foundation of America before considering a hair transplant. He recommends waiting until your lupus is very well-managed before undergoing such a procedure, as a hair transplant itself can reactivate lupus or trigger a flare.
- Keep brittle hair hydrated! I’m a big fan of humidifiers and use one myself for this reason (read more here).
Sources and for more information…
I hope you have found this lupus hair loss page useful. If you suffer from lupus and can offer advice to other women experiencing hair loss, please do contact me here.