Lupus Hair Loss: Why It Happens and Strategies for Coping
This article was written by Barbara Leech, with added information by Krystina Ostermeyer about lupus hair loss.
'Tis the season for me to deal with handfuls of freshly fallen hair as well as snow. Once again, lupus is making my hair fall out and the number of strands lost each day is staggering. I know the volume of loss is alarming because I counted exactly how many I lost yesterday.
I kept track in the shower, through combing and drying my hair and then attempts at styling — the total was 25. Not to mention I counted the ones I found on my shirt and coat and yes, even the ones I saw fall onto the floor.
A total of 38 hairs lost that day — that I'm aware of. So, here is my advice if this is happening to you: don’t count them.
Realizing the massive number of hairs falling out of your head on any given day will completely upset you and make you imagine that you'll be bald in two months. File this among “things I am better off not knowing.”
Causes of Lupus Hair Loss
Shockingly, lupus can cause you to lose not just the hair on your scalp, but also your eyebrows, eyelashes, beard, and body hair. Because lupus is inflammatory, the inflammation may have a direct effect on the hair follicles, causing the hair loss.
In fact, this inflammation so often causes hair around the hairline to become frail and thin that it breaks easily, that it has its nickname – lupus hair.
Hair loss may be one of the early symptoms of lupus. Unfortunately, hair loss can be a symptom of many other diseases and disorders, so this one early sign does not always result in an early diagnosis.
Aside from inflammation, there are a myriad of other causes of hair loss, as discussed earlier in the article. We’ll discuss them in greater detail below:
- The type of lupus. Certain types of lupus are more likely to cause hair loss than other types. For example, lupus of the skin (cutaneous lupus), which can be further broken down into either discoid lupus or subacute cutaneous lupus, is most likely to cause lupus. However, the damage is reversible once treatment begins. Other types of lupus can cause lupus, depending on other factors.
- Medications. Typically, there are two types of lupus medications that are associated with hair loss. One type is corticosteroids – you may have heard of the drug called prednisone. It is a powerful anti-inflammatory medication, but it can come at a cost, and that cost is your hair. Another drug type is immunosuppressive medications, of which there is a lot. These medications are designed to suppress the activity of the immune system, but that can also mean a loss of your hair.
How Barbara Deals With Her Lupus Hair Loss
My hair is one of the things that lupus has stolen from me that impacts how I view myself and present myself to the world. Hair loss can settle into that quiet corner where your confidence lives and clean house.
For the most part, I try not to focus on it, because that would be pure vanity, which is not a dominant force within me. But I am human, and female (and we are judged by our lovely locks whether we like it or not) so now and then horror hits me as I consider how many hairs I hold in my hands, find in my comb or scattered about my house like some shedding beast resides there.
For me, lupus is that horrible beast, and it attacks my hair follicles for about four to six months of every single year. Right now, I find it hard to look in the mirror and be ok with what I see — in the morning, after sleeping on my thin, crazy tresses, they resemble those of a cancer patient.
I have not found there to be a regular, predictable pattern to the hair loss months either.
This particular type of lupus attack seems to hit long before a full-blown flare strikes, and the only thing I can count on is it will get worse before it gets better, and it will last for at least four months or maybe even longer.
Causes of Lupus Hair Loss
Once the hair loss finally stops, new hair thankfully does attempt to grow back. But honestly, the new growth cannot keep up with loss throughout the year.
Luckily, I was blessed with a crazy amount of hair. My mop of hair was so thick as a teen that I could barely get a hair pick through it, and seeing my scalp was simply not possible.
But lupus has changed all of that drastically. I am no longer that girl with the thick long hair, and I am seeing more and more of my scalp with each passing year.
I have considered clip-in hair extensions just to make my hair appear fuller, but the last thing I want to do is to test what remains on my head with the weight and pull of the hair clips.
Besides lupus, I have recently been diagnosed with another autoimmune disease of the thyroid (Hashimoto's thyroiditis), which adds intense brittleness to my hair issues. I feel so ugly right now, in the midst of a major flare and with hair making me look like a deranged Muppet.
So, I have implemented as many tricks and tips I can gather to try to help curb the intensity of this attack and make the most of what remains.
Preventing Lupus Hair Loss
There are things you can do to prevent hair loss associated with lupus. First of all, take your medications as prescribed. Most of the time, hair loss is temporary. Treating lupus can help the hair to grow back.
However, remember how I said that there could be a variety of reasons for hair loss? If you are treating your lupus and your hair is not growing back, do not automatically assume that lupus is the ultimate cause of your hair loss. Remember, there are many of reasons for hair loss.
Lupus is an autoimmune disease, and this means that your body is attacking itself. It is also a well-known fact that if you have one autoimmune disease, you are subject to other autoimmune diseases – and some autoimmune diseases also have hair loss as a symptom, such as disease of the thyroid.
Given the fact that you already have lupus, there is not a lot you can do to prevent further autoimmune disease besides proper hand hygiene and staying well, but being diligent and seeing your physician if you suspect you have another health condition aside from lupus is important.
Here are some other great tips for preventing further hair loss:
- Stress can potentiate hair loss. Avoid stress as much as possible and if stress is unavoidable, attempt to manage.
- Avoid sun exposure. Many people with lupus are photosensitive. If you love the sun, apply sunscreen liberally, wear long pants and long-sleeved shirts, and wear a wide-brimmed hat. According to Molly’s Fund, “This applies even to days that are cloudy as about 70% of ultraviolet rays still come through those clouds!”
- And, incredibly important: “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.”
Additional Ways to Manage Lupus Hair Loss
- Wide-tooth combs or hair picks: I always use a very wide-toothed hair pick or comb to get through any tangles. I avoid ponytails or pinning hair up in any way that adds weight or tugs on the hair. No extra pulling of any kind!
- Gentle shampoos: I try to avoid additives like parabens, formaldehyde, artificial scents and any additives I cannot pronounce. I look for shampoos with shea butter and argan oil for deep conditioning. Pura d’or is a great organic shampoo for hair loss prevention and seems to slow down the hair loss. There is another great shampoo to combat hair loss called Nioxin. It can be somewhat drying to my hair, so I use a deep moisturizing conditioner with it, but it does seem to stimulate the scalp and slow the hair loss down.
- Natural remedies: Though this certainly did not stop the fallout in my experience, natural essential oils did slow it down. Rosemary essential oil, found at the natural pharmacy and health food store can be mixed with a little water and rubbed into scalp where the hair fallout is happening. It is quite smelly, so I use it at night before bed.
- Supplements: I take vitamin D supplements, which is essential to combating hair loss and many of us lupies are deficient in it. Vitamin B-12 supports your hair and skin as well. Above all adding Biotin supplements can significantly help curb the hair loss and will support your nail health too. I also take omega-3 fish oil supplements, which support healthy hair.
- Add color: Weird but true, when I finally decided to do something for me and got foil highlights (hoping it would create a look of more hair) my hair fall out slowed to a stop. No idea why except maybe it simulates something within my scalp. So, every time I get foils done, my hair may get drier (and more damaged from chemicals), but it slows or stops the fallout. I am almost blond now.
Treatment Options for Lupus Hair Loss
Treatment of lupus hair loss can be tricky. Often the best treatment is simply treating your lupus – as discussed, most often, the hair loss is reversible – once your lupus is under control and your hair will grow back. However, it can take months.
So, what are you to do in the meantime?
Well, if there are any other underlying causes, definitely speak with your physician. For example, if you have an underlying autoimmune thyroid disorder, treating the thyroid disorder can improve the hair loss. Treating anemia can also improve the hair loss.
There are also other ways to minimize the look of hair loss. Here are some great ways that you can do that:
- Change your hairstyle. Although you may be attached to a particular look, certain hairstyles are known to minimize the appearance of hair loss. A shorter haircut doesn’t flatten the roots to the scalp, so the hair loss isn’t quite as obvious.
- Try hair extensions or wigs. Both great ways to try out different looks!
- There are a vast amount of scarves and headbands available, and most are inexpensive. Pick some up at your hair salon or drugstore.
- Purchase a silk pillowcase. A silk pillowcase is gentle on the hair while sleeping, preventing hair breakage at night.
- Consider changing your nutrition. Certain foods are supposedly helpful in promoting hair growth, such as flax seeds, walnuts, salmon, tuna, kale, Greek yogurt, eggs, chicken, oysters, sweet potatoes, spinach, lentils, and avocados. Although I wouldn’t rely on nutrition solely in treating your hair loss, I would consider adding these foods to your diet! They are rich in nutrients such as omega-3 fatty acids, magnesium, selenium, zinc, and iron.
With lupus, it seems something disturbing or scary is always happening. Though there are tips to try to make it less damaging and dramatic, there is nothing to prevent or completely stop it. I try and remain positive and remember that my beauty lies within me, not in what people see.
It is tough though when you see lupus turn you into someone you do not recognize. For now, I am taking my supplements and both my lupus and thyroid medication like clockwork, and I may desperately schedule my next hair color appointment, looking for a result that has little to do with my hair color.