Lupus Hair Loss and Alopecia Explained
Getting diagnosed with lupus is scary and upsetting enough without the added stress of potential hair loss. The physical ramifications of what systemic lupus erythematosus (SLE) can do to the body internally are indeed very scary. But the emotional toll of looking in the mirror and seeing a dramatic change in our external appearance is just one more thing that can make living with lupus more difficult.
So, can lupus cause hair loss? The simple answer is, unfortunately, yes. Because lupus causes widespread inflammation throughout the body, many times it can also involve your skin-which is the largest organ of the body. Inflammation of the skin can result in rashes or even hair loss occurring most often on the face and scalp.
The medical term for hair loss is alopecia. It is usually described as hair noticeably thinning or falling out in clumps or in patches. Although a few people with lupus will lose clumps of hair, the disease can also cause gradual thinning of the hair on your scalp. It is also possible to notice loss of hair of the eyelashes, eyebrows, beard or body. 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.
Hair loss can be one of the first signs or symptoms of lupus. Approximately half of lupus patients will experience at least some form of lupus hair loss and alopecia. This often occurs at the beginning of the disease but can also appear along with certain medications and treatments that may be prescribed to manage more serious lupus symptoms.
How do I know if my hair loss is caused by lupus or something else?
Just because you may be experiencing hair loss does not mean that you have lupus. There are several other disorders can cause hair loss, so talk to your doctor if you notice unusual hair thinning or hair loss. It is important to note, however, that a certain amount of hair loss each day (50-100) is perfectly normal. Sometimes it may feel that you are losing more than what is considered normal, but these types of variations are also often nothing to worry about.
Here are a few reasons why a person might experience excessive hair loss:
- Alopecia Areata:This is believed to be an autoimmune disease where the body’s immune system forms antibodies that attack its own hair, seeing it as a foreign invader. This is much like in SLE, where the immune system attacks its own cells and organs. With alopecia areata, the hair loss is usually in very smooth round, coin-sized or larger patches. It is possible that it can result in complete loss of body and scalp hair, but this is rare.
- Genetics or Heredity: The medical term for this is asandrogenetic alopecia. This type of hair loss is the most common. It affects men and women differently. Women will often experience this as thinning hair, while men might experience this as thinning hair, baldness or both. While this is not curable, medical treatments are available to slow down the process.
- Chemical Treatments: Bleaches, straighteners, tints, perms and other chemical-based hair products can cause the hair to weaken and turn brittle. This can cause the hair break and fall out. Stopping the use of these chemical treatments will give your hair a chance to grow back.
- Recent Severe Illness
- Thyroid Issues
- Vitamin or Nutritional Deficiencies
- Other Specific Skin Diseases of the Scalp
- Physical/emotional stress and hormonal changes
If you are experiencing any concerning hair loss, please speak to your dermatologist about the best options for you. If you have not been diagnosed with lupus but are experiencing hair loss in conjunction with the following symptoms or any of the other lupus symptoms, please seek the advice of a rheumatologist or another medical provider:
- unexplained fevers
- fingers or toes that turn blue with exposure to cold
- joint /muscle pain
- extreme fatigue
What causes lupus hair loss?
There are two main things that can cause hair loss in lupus patients:
- The type of lupus: For those who suffer from cutaneous lupus (lupus of the skin) which can be either in the form of chronic discoid lupus or subacute cutaneous lupus, hair loss happens because damage that occurs alters the normal function of the hair follicle. Once treatment begins, the hair loss is often reversible.
- Medications: There are certain medications that might also cause hair loss related to lupus treatment. This type is often reversible, but you may have to wait until your lupus is under control to treat the hair loss. Two types of medications that are often prescribed to lupus patients can also cause hair loss:
- Corticosteroids like Prednisone: These are powerful anti-inflammatory medications.
- Immunosuppressive medications: These are prescribed to suppress the immune system’s activity.
*For those who are experiencing hair loss and are on any of the above medications, please speak with your physician about an adjustment to the dosage or treatment. Changes in medication and/or dosage may reverse the effects of the hair loss. Your physician may recommend not changing or altering your prescriptions until your lupus is well managed.
Can I prevent hair loss from lupus?
You may not be able to prevent all hair loss and/or thinning but you may be able to minimize the loss by following a few steps:
- Don’t wait to get going with your lupus treatment. The sooner you start, the sooner you may be able to reverse hair loss due to discoid or cutaneous lupus. If you think you might have lupus, speak with your doctor about a potential lupus diagnosis.
- Try to avoid lupus flares by managing your stress levels and maintaining a healthy mind/body balance along with following the treatment plan set forth by your physician.
- Avoid exposure to the sun as much as possible. Many lupus patients experience photosensitivity which can cause flares. Use every precaution when you need to be in the sun. This means using sunscreen and wearing a wide brimmed hat, long sleeves and long legged pants. This applies even to days that are cloudy as about 70% of ultra violet rays still come through those clouds!
- Speak with your physician as soon as you realize that you may be experiencing significant hair loss or thinning. They will be able to help determine whether this is stemming from prescribed medications or from a lupus flare.
- Contact your physician if you notice any scaly round lesions or rashes on your face or scalp. The concern here is that discoid lupus may cause permanent hair loss due to scarring in the affected areas if not treated quickly.
Three Common Lupus and Hair Loss Questions
- How are the causes of hair loss and rashes diagnosed?
There is often no single “test” that can provide a diagnosis. The physician will take into account features of the rash that are visible, any relevant laboratory tests, and, if needed, a skin biopsy. If you have a rash, please see an experienced dermatologist.
- My hair used to be shiny and soft, but now it’s dry, brittle and thin and even stopped growing. Is this common with lupus patients and what can I do?
Many lupus patients can experience “lupus hair” which is described exactly this way- brittle and dry especially along the edges of the scalp. There can be causes for this other than lupus, such as styling treatments, nutritional deficiencies, thyroid imbalance, etc. Some basic lab tests to check iron, levels of vitamin B and thyroid levels can rule out any other potential causes. Some people have had luck with biotin supplements but it is important to speak with your treating physician before beginning any supplements as not to interfere with any other medications that you are taking. *It is important not to experiment with over-the-counter medications, like Rogaine, without your doctor’s approval. Rogaine is for treating male and female-pattern alopecia, which is a completely different type of hair loss than is usually seen in lupus.
- I have discoid scarring on my face and scalp and am really embarrassed to go out or even go to work, what can I do?
Discoid lupus face scars or rashes from cutaneous lupus can affect everyone differently psychologically, socially and emotionally. Having any visible scarring on the face or even patches where the hair will not grow back can have a dramatic effect on self-esteem and quality of life. Many people with lupus experience just what you are describing, as self-consciousness from lupus scarring can often lead to avoidance of social and work situations. This can cause extreme feelings of isolation and can lead to an increased risk for depression and even self-harm, especially for young people suffering with visible signs of lupus. It is very important to have a good support system of friends and family as well as open and honest communication with your treating physicians to help identify early onset of depression and get the help that may be needed from a mental health professional like a counselor or psychologist. You aren’t alone! Support groups can also be a great resource to help you feel less alone.
5 Things You Can Do About Lupus Hair Loss and Alopecia
Even though losing hair can be scary, it can often be covered up and is usually treatable. Hair can take up to six months to grow back but there are things that can be done in the meantime to minimize the appearance of hair loss. Here are 5 tips that can make you feel more in control of your hair loss:
- Go wig shopping!: Wigs are not the same as they used to be, can look very natural, and actually be a really great option to cover significant hair loss or thinning. Make a fun date of it and drag a friend along to try some on and see what you think! Change up your look altogether for some fun!
- Try a Change of Hairstyle: Your hairdresser might be able to recommend a new style that can help cover any bald spots or styling options that can add the appearance of volume. Haircuts that include layers can also give the illusion of thicker hair.
- Hair Extensions might be something to consider: If you still have some healthy hair but have experienced noticeable thinning or have some bare patches on the sides (but are not actively losing hair), hair extensions can be attached to the existing healthy hair by sewing, knotting or using links and can give the appearance of thicker, longer and healthier hair. Try to avoid glues, chemicals and/or heat processes if getting extensions.
- Accessorize! There is no limit to the stylish options in scarves, bandannas, hats and accessories available at all price points. Scour the internet for options and even check You Tube for cool videos on tying wraps or scarves to cover hair loss!
- Transplantation or Cosmetic Surgery: If all else fails, you can look into transplantation or other cosmetic surgery procedures to help with extreme hair loss and scarring. Make sure to check with your treating physicians before embarking on this option to make sure that you are in your optimum state of health.
While losing your hair can be scary, most types of lupus hair loss and alopecia are eventually reversible or can be made reversible if caught in early stages. There are things you can do to make living through hair loss a bit easier and take back some feelings of control. The first thing to understand is that a person with any chronic illness is just that. A person. The disease should not become your identity. There is so much more to each individual than their diagnosis, symptoms and outer appearance, so maintaining a positive but realistic attitude can really help when learning to live with any chronic disease. Lead as full of a life as possible and understand that this is just a part of your life, meaning that the disease is what you have, not who you are. If you are feeling depressed or hopeless, or having trouble accepting what is happening to your appearance, please reach out to friends and loved ones or even a mental health provider to help you get a different perspective. Counseling from a professional can help provide the tools you need to cope with these complicated feelings.
Sources: www.lupusny.org, www.mayoclinic.org, www.lupus.org, www.wikihow.com, lupus.about.com
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**All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.