Alopecia: Understanding Hair Loss and Lupus
About 70% of people with lupus will experience hair loss at some point in their disease. Sometimes, this hair loss is not a symptom of lupus, but a separate condition known as Alopecia areata. Let’s find out more about it.
Although there are many conditions that can cause hair loss, alopecia areata is the second most common form for people with lupus (with the first most common cause being normal age-related male and female pattern baldness.) We actually have an older article on alopecia, here, but we wanted to go into a little more detail about what alopecia is, what causes it, how it relates to lupus, and how it can be treated.
What is Alopecia?
Alopecia areata is a condition where the body's own immune system attacks hair follicles, which are small organs in the skin that produce hair and keep it healthy. When hair follicles are damaged, the hair breaks away, leading to hair loss (alopecia) in random-seeming patches throughout the head (areata). Alopecia can happen anywhere on the body and is known by a few other names (Alopecia barbae, Alopecia ophiasis, Alopecia totalis, and Alopecia universalis) depending on what part of the body the hair loss occurs. However, all of these are forms of Alopecia areata, have the same cause, and are medically treated in the same way.
Like many autoimmune diseases, Alopecia areata is genetic, so it runs in families. About 20% of people with alopecia have at least one family member that also has alopecia. You can read more about lupus and genetics, here.
Alopecia can strike any area that grows hair, including the scalp, face (including eyebrows) and body. In severe cases, it can affect hairs in the nose and ear as well. These are not just cosmetic - the loss of hair in the ear can lead to infections and hearing loss, and lost nose hairs make it harder for the nose to filter out particles in the air, which could cause issues with breathing. Eyelashes can also be lost due to alopecia and, because eyelashes protect the eyes from dust, dirt, and bacteria, this can lead to eye problems, including infections.
Parts of the body that are similar to hair, such as the fingernails and nail beds, can also be attacked by alopecia areata, and while fingernails will still be present, they may become coarse, gritty, pitted, or brittle and easier to break. Often, the skin that loses the hair due to alopecia will look otherwise healthy underneath, though other conditions can occur alongside alopecia that can damage the skin, too.
Symptoms of Alopecia
The most common symptom of alopecia is patches of hair loss. Changes in the fingernail’s strength and texture are also common, usually showing up as pitted, fragile nails, though they may also be ridged or grooved. This is because alopecia affects how keratin - the protein that makes up fingernails and hair - is produced and used by the body.
However, other symptoms can still occur:
Hair loss from alopecia often occurs early in life, in a person’s 20s.
Itchiness in the bald patches
Lost hair may regrow with a different color or texture. This can be a slight or drastic change, such as from brown and straight hair to red and curly.
This hair growth can take the form of very short hairs that appear to ‘taper’ down to the scalp - thicker near the top and thinner near the scalp. These are sometimes known as “exclamation mark” hairs.
The hair follicles may change appearance, such as larger ‘pores’ or ‘additional holes’ in the follicle area. Hair shafts can sometimes be seen, which appear as dark ‘spots.’
Baldness from alopecia is not permanent. The hair can grow back afterwards but can also be lost again as symptoms return in the form of flares. With lupus, especially cutaneous lupus, lesions and sores can lead to hair loss and scarring on the scalp and prevent the regrowth of hair, which can make the bald patches permanent. If this happens, it’s best to talk with a dermatologist or rheumatologist about treatment options.
Recognizing Alopecia
Usually, by the time someone is considering alopecia, the distinctive bald spots, loss of hair and symptoms are readily visible and easy to identify.
However, health providers might do tests (including antinuclear antibody tests, or ANA tests) to make sure that infections and other skin diseases - which require different treatment—aren’t present. In fact, through this testing, alopecia often ends up being one of the reasons that a person might be diagnosed with SLE!
Treating Hair Loss and Lupus
Alopecia areata and the loss of hair mainly affect mental health and quality of life, causing self-consciousness, social isolation, and frustration, leading to stress, anxiety, and depression. You can read more about mental health and lupus, here.
Even when alopecia is mainly cosmetic, treating alopecia is considered to be vital for improving the mental health and quality of life for people with lupus.
With lupus, because the issue is autoimmune, the doctor might recommend topical remedies like hydrocortisone cream, which is put on the skin to treat lesions, plaques, and other skin conditions. Corticosteroids might also be injected or taken as a pill. This medication is often already a part of a person with lupus’ treatment already. When cutaneous lupus causes alopecia through sores and lesions, then those skin symptoms will likely be treated with corticosteroids and other medications to prevent scarring and permanent hair loss. Most of the typical medications that treat lupus will also treat alopecia.
People with lupus should avoid phototherapy, a treatment that uses UV light. Although this light can help improve skin and nail growth, people with lupus are often sensitive to UV light and it might cause a flare. Hair transplants are also not usually a viable option due to the inflammation potentially attacking those hair follicles, too, making the transplant ineffective.
Because both lupus and alopecia are autoimmune, hair loss may come and go with flares. Tracking symptoms in a journal or app can help you spot patterns over time.
Alopecia, like lupus, is not contagious and cannot be spread through touch. It is also not a curable disease, but it can be treated and go into remission. It also has flare-ups, which might have their own triggers or overlap with a person’s lupus flares. Every person’s triggers are different, but researchers and medical professionals are working on a deeper understanding of how flares work and how to detect them even before they happen. One option to help predict lupus flares — and give you time to make changes that might prevent them — is the aiSLE® DX Flare Risk Index, available through Mayo Clinic Laboratories. The test can predict flares 12 weeks before they happen. If this is of interest, speak with your physician.
Basic Hair Care Tips for People with Lupus
There are a few ways that people with lupus can take care of their hair - and improve their self esteem - even with alopecia.
Avoid hard water (water with a high metal concentration) as it can cause a lot of problems for hair, even if your body is used to it. Although some amount of hardness in the water is fine to drink and an unavoidable and natural occurrence in some areas, sometimes it will affect how the body grows and maintains hair when washed.
Take care of your scalp. Certain oils can help control inflammation but watch out for scams. Certain shampoos can have medication or essential oils in their formula that might help, and others are free of additives to be very gentle on the scalp.
Avoid scratching. Even if it’s itchy, scratching will not help; in fact, it can damage hair and cause hair loss.
Try new hairstyles! How you wear your hair can have a major effect on hair loss and the health of the scalp, so keep an eye on that. Certain hairstyles can also cover up or hide bald areas.
Avoid bleaching and dyes. While dyeing and styling your hair is an important form of self-expression and a major self-esteem and confidence boost, it can also potentially damage the hair and scalp.
Protect yourself from sunlight. Use sunscreen (and hats) to protect the scalp and hair from sun damage. Swimming in hard water, treated water, or contaminated water can also cause damage to the skin and hair.
Everyone’s body is different, so basically, work off of feel and trial and error for how your scalp feels and what seems to work for the health of your hair.
Stress, Lupus, and Hair Loss
Stress can make both lupus and alopecia worse by increasing inflammation. Try to listen to your body and avoid pushing yourself past your limits. If you do, give yourself grace.
Meditation, journaling, art, gentle exercise, positive affirmations or simply connecting with supportive people can all help. A diet rich in protein, vitamins, and healthy fats — such as the Mediterranean diet — supports overall health and may benefit hair growth. Nutrients like Zinc and Omega 3 are particularly linked to stronger hair, but always talk to your doctor before starting supplements .
A LupusWarrior’s Takeaway: It’s Not Vanity!
How we look is a major part of how we think of ourselves, so it is far more than just ‘not caring what others think.’ Physical appearance is an important aspect of themselves and their identity for many people, and may be integral to their mental health and stress levels (and thus their physical health).
Our physical appearance, unfortunately, affects how other people and society treat us. Skin lesions, rashes, and alopecia, while not contagious, can have intense and enormous social, emotional, physical, and financial effects. People with alopecia can face discrimination, cruel statements, and even lose opportunities that may not even be related to appearance. This is called psychosocial distress and it is stressful, upsetting, and frustrating.
Being “shamed” for a person’s appearance - or being told to “not worry about what others think” —is not helpful at all. In fact, these comments feel dismissive, even when they are well-intentioned. The decision to accept ourselves for who we are and what we look like is a very individual journey. Whether that is skin-safe makeup, special hairstyles, or other methods, they are all valid and potentially life-changing for some people!
If you’re experiencing hair loss, you’re not alone. Many people see improvement once inflammation is under control. Talk with your healthcare provider about treatment options and strategies that fit your body and your journey.