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.
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.
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.
As I mentioned earlier, hair loss can be one of the first symptoms, and the lupus website Molly's Fund suggests that around 50% of lupus sufferers will experience it to some degree.
Other symptoms of lupus include:
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'.
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.
… 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.
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.
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.
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.
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.
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.
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.