If you’re suffering from lupus, you may have experienced one of its first common symptoms: hair loss. Why does lupus hair loss occur and what can you do to prevent it? In this post, we’ll cover both irreversible and reversible types of hair loss.
What is lupus?
Lupus is a chronic autoimmune disease that can damage almost any part of the body. The immune system produces antibodies that attack the healthy parts of the body and, thereby, causes damage and inflammation to the tissue.
It’s a difficult ailment to diagnose since it has many symptoms that mimic other conditions, although it is not contagious. It is a disease that goes through cycles of flare-ups and remission. Lupus is most commonly found in women, between the ages of 15 and 40. It is also more frequently diagnosed in African-Americans, Hispanics, and Asians.
Types of lupus
According to the John Hopkins Lupus Center, there are five main types of lupus, which will be important to our discussion of hair loss related to lupus.
- Systemic Lupus Erythematosus (SLE): This is the most common type of lupus, which affects numerous organs throughout the body. It can be categorized as mild or severe. It usually is marked by chronic inflammation that presents itself in the kidney, joints, and skin. This form of lupus can also have serious effects on the lungs, nervous system, and heart.
- Discoid Lupus Erythematosus: This is a form of lupus limited to the skin. It mostly presents through skin rashes and lesions, which are scaly and red, but not itchy. It also has a small chance of turning into SLE.
- Drug-Induced Lupus Erythematosus: Certain drugs can cause some lupus-like symptoms in those without SLE, but it rarely affects major organs. This form of lupus is temporary and usually does not last more than a few months after the medications are no longer taken.
- Neonatal Lupus Erythematosus: This is a form of lupus that affects babies of women who carry certain antibodies. Only 40% of women who give birth to children with neonatal lupus actually have lupus themselves. Neonatal lupus generally only affects the skin of these children and commonly clears up on its own after a few months even without treatment.
- Childhood Lupus: This is a form of lupus that affects children and is almost identical to SLE. Boys are more likely to develop this condition and it usually targets organs like the kidneys to a much greater degree than adult lupus.
What are lupus symptoms?
Since no two cases of lupus are identical, it is impossible to list each symptom that will occur in every person. However, there are a few commonplace symptoms that often help identify lupus, including:
- Butterfly-shaped rash on the cheeks
- Swelling, pain, and stiffness in the joints
- Unexplainable fever
- Skin lesions due to sun exposure
- Pale or purple finger and toes
- Chest pain and shortness of breath
- Dry eyes or mouth
But, for many people, these symptoms often start with hair loss. It can be one of the first, most noticeable traits of this condition.
Does lupus cause hair loss, or alopecia?
Unfortunately, lupus can cause hair loss for many patients. Hair loss is known medically as alopecia. If you have hair loss related to lupus, you may experience:
- Hair that falls out in clumps
- Thinning in the eyebrows, eyelashes, or beard
- Overall thinning of your hair
- A change in hair texture, causing brittle or ragged hair
- Worse symptoms during flare-ups
For some, this lupus hair loss may only be temporary. Others may suffer from more permanent changes to their hair.
Reversible vs. irreversible lupus hair loss
As Molly’s Fund, a lupus organization, explains:
“There are two main types of alopecia: scarring and non-scarring. Scarring means that the hair follicles have been destroyed by inflammation (and thus there is no chance of hair re-growth). Discoid lupus is one major cause of scarring alopecia. However, if caught early enough (before scarring takes place), it is possible to see hair regrowth. Non-scarring means that the hair follicles are still present and hair regrowth is possible.”
Another type of reversible hair loss from lupus can occur based on which medications you’re taking. Medications like prednisone, antimalarials, and immune system suppressants can actually lead to your hair loss, rather than the disease itself. Other related explanations include:
- Thyroid disorders
- Nutritional deficiencies
For causes like medication use and stress, this hair loss can eventually be reversed leading to restored hair growth. Let’s talk about some ways to reverse this lupus hair loss or prevent it in cases of discoid lupus.
How to stop hair loss from lupus
The direct cause of lupus is unknown, but it is likely that a combination of genetics and the environment results in this disease. Those who might have developed this disorder due to genetics might have certain triggers that facilitated its onset.
According to the Mayo Clinic, lupus can be provoked by:
- Exposure to sunlight, leading to skin lesions or other body responses
- Getting an infection which can initiate or cause a relapse of lupus
- Certain medications that can cause drug-induced lupus in predisposed patients
These same exacerbating factors can be responsible for increased hair loss. To stop it then, often avoiding triggers can slow your rate of hair loss.
1. Talk to your doctor about treatments
One of the most important factors for avoiding irreversible hair loss due to discoid lupus is to get treatment, fast. Discoid lesions on the scalp can lead to permanent skin damage that inhibits hair growth. If you’ve read up on other lupus symptoms and think you have the condition, talk to your doctor. They can provide help with treatments and lifestyle strategies to regulate flare-ups to avoid hair loss.
2. Examine your medications
If you’re already getting treatment and think your hair loss may be due to medications, again, talk to your doctor. They may be able to recommend other options for treatment. Once your condition is stable and well under control, your doctor may be able to take you off these medications too. Once you’ve stopped use, your hair will usually grow back.
Do not stop taking your medications without talking to you doctor first. Even if you suspect that it’s leading to hair loss, stopping or missing treatments could impact your overall recovery.
3. Eat a healthy diet
Eat a lupus-friendly diet that incorporates fruits and vegetables to slow hair loss. But, as Lupus UK explains:
“If you are concerned that a nutritional deficiency could be contributing to your hair loss, it is best to discuss this with your doctor. Vitamin tablets and supplements are not an alternative to eating healthily and it is always wise to talk about them with your GP as they may interact with some medications.”
Some hair loss vitamins and supplements can help with hair health, though, so talk to your doctor if you’re interested in those.
4. Don’t use over-the-counter treatments, like Rogaine
As the Lupus Foundation of America explains:
“If you have lupus and find that you are experiencing hair loss, do not use over-the-counter hair loss treatments, like Rogaine, before speaking with your doctor. Rogaine is for treating male- and female-pattern alopecia, which is a completely different type of hair loss than we usually see in lupus.”
5. Avoid lupus triggers
Stress, sun, and sleeplessness can all exacerbate lupus hair loss. To avoid these triggers:
- Manage stress levels with relaxation techniques, like meditation, yoga, or prayer
- Talk to a counselor for coping mechanisms for stress
- Discuss workplace accommodations with your boss
- Always practice good sleep hygiene
- Stay indoors when the sun is potent, between 10 AM and 4 PM
- Use water-resistant sunscreen with an SPF of 30 or greater, even on cloudy days!
- Wear a wide-brimmed hat, long sleeves, and long pants if you’re outside for a longer period of time
- Avoid halogen or fluorescent lights (again, this may have to be a conversation with your boss)
6. Take care of your hair
To avoid even more lupus hair loss, there are a few things you can do to prevent it:
- Use a silk or satin pillowcase to prevent breakage
- Soften brittle hair with organic, unrefined coconut oil, the Hair Sentinel explains
- Run a humidifier at night to keep brittle hair hydrated
- Avoid heat, intensive shampooing, or coloring your hair
Chronically Brittany on YouTube talks more about how lupus hair loss affected her and provides inspiration and hope for dealing with hair loss.
What to do if you have irreversible hair loss
If you’ve suffered from hair loss due to discoid lupus, you may not regrow your hair back. This is a difficult situation for anyone. Tt’s important to ask for support from loved ones around you, or join a support group with others who understand the challenges of living with lupus.
Further, there are some ways you can minimize the appearance of hair loss:
- Consider a shorter hairstyle, so the weight of the hair doesn’t pull at the roots and expose patches
- Use hairpieces or extensions to create a fuller look, as long as they don’t use glue or heat to apply
- Wear a full or partial wig for severe hair loss–new options look and feel natural
- Find hair wraps, scarves, or bandana styles that match you and your personality
Another YouTuber, Zsja Zsja, creates a friendly, informative video about some fun ways to create head scarves and wraps.
How can I get a lupus diagnosis?
One of the main issues with diagnosing lupus is that it it presents as an amalgamation of symptoms that can easily be misconstrued as being a different condition. Because of this, it can take months or longer to diagnose and you will likely go through several other diagnoses first. You can expect tests from blood tests, imaging tests, and skin and kidney biopsies along the way. Check out this in-depth explanation of how a diagnosis of lupus would be confirmed.
Also, hair loss won’t always indicate lupus. Hair loss can be tied to aging, nutritional issues, or other disorders. Make sure to share all of your symptoms with your doctor so they can make the right diagnosis.
How is lupus treated?
So how exactly is lupus itself treated? Since lupus is such a varying disorder, it depends heavily on where and how it has manifested in your body. Physicians use a wide spectrum of medications throughout the lifetime of the patient when combating lupus. Some patients have found relief from the following options when treating lupus:
- Non-steroidal anti-inflammatory drugs (NSAIDs)
The goal of these drugs is to prevent and treat flare-ups by suppressing your overactive immune response. Proper medication can lead to reduced inflammation, which can help control other symptoms, like joint pain and fatigue. It can also prevent organ damage, which is one of the biggest dangers from lupus.
Make sure to always work with your doctor to find the treatment plan that works best for your specific condition. You and your doctor should stay in regular contact about your treatment plan to make sure it is effective or to figure out if it needs tweaking. Always report new symptoms and make sure to keep track of anything that causes a flare-up.
Your first step is to get a diagnosis. To find a doctor in your area who specializes in treating more complicated conditions, like lupus, click the button below to find a pain specialist. They can help you get the help you need. They can also help suggest treatments for lupus hair loss.