Hair loss “alopecia” is commonly experienced by people with lupus. It may be permanent, or not, depending upon the cause. For many people, it can result in a loss of self-esteem and may cause depression, anxiety, and other emotional issues
“Hair loss is by far the biggest symptom to deal with emotionally, especially as an 18 year old girl. Twenty years on it’s still no better.”
What causes hair loss in lupus?
There are two major forms of alopecia, or hair loss, which can occur in people with lupus. The first form is referred to as “scarring alopecia”, which is an area of permanent hair loss usually due to Discoid Lupus Erythematosus (DLE). Discoid lupus generally only affects the skin, with most patients never developing the systemic form of lupus. It is usually confined to light-exposed areas of the skin, such as the head, neck, and backs of the hands. The affected areas may be coin-shaped (discoid); they are usually scaly, red, and sometimes slightly raised leading to scarring. When the lesions occur on the scalp, they can unfortunately cause areas of permanent hair loss. You can learn more about discoid lupus in our booklet, ‘Lupus and the Skin’ HERE.
In people with Systemic Lupus Erythematosus (SLE), the most common form of hair loss is “non-scarring alopecia”. This usually consists of thinning of the hair that is not necessarily permanent. The hair may thin diffusely, but often it has a tendency to occur more prominently at the front edges of the hairline. The hair can be fragile, breaking easily, causing the hair strands to be shorter than normal. This type of hair loss is due to the hair follicles resting during periods of increased lupus disease activity (this process is called “telogen effluvium”), presumably to save energy and calories in the body for more important functions than growing hair. The condition is usually reversible and the hair grows back when treatment brings the SLE under control.
“I have noticed that after the initial start of lupus the hair loss did calm down. It tends to get worse during flares. My hair has got very thin all over rather than patches of baldness.”
Another potential cause of non-scarring alopecia in people who have SLE is “alopecia areata”. Alopecia areata is actually another autoimmune disorder where the immune system attacks the hair follicles and causes the hair loss, typically in small areas.
There can be other causes of hair loss in people with lupus; a few have been outlined below:
- Thyroid disorders (reversible)
- Stress (reversible)
- Medications (such as antimalarials, steroids, methotrexate, leflunomide, and cyclophosphamide)
- Nutritional deficiencies
“I lose hair if my thyroid function is low. I’ve also lost a lot of hair because of iron deficiency.”
When hair loss is caused by medications the hair should regrow when the treatment is discontinued. It is important not to stop your medication without your doctor’s approval and monitoring. In some cases where hair loss is caused by active lupus, these medications could be helping to reduce the amount lost.
“10 or so years of hydroxychloroquine and it has stopped coming out; in fact it stopped quite quickly. Although it’s as normal on most of my head, it’s still a bit thin on top.”
“Last year my rheumatologist referred me to a dermatologist. He suggested a course of steroid injections in my scalp (dermojet). I had four lots of injections and they worked quite well.”
“My rheumatologist referred me to a dermatologist for my lupus related hair loss. I was prescribed Clarelux hair mousse which does seem to help. My hair loss has diminished and my hairdresser recently commented about how much calmer my scalp looks and mentioned that there’s lots of new, dark growth.”
What is the best way to cope with hair loss?
There is no right or wrong way to cope with hair loss — it is a very personal decision and there are many ways to address hair loss and the feelings that accompany it. Here are some tips which you may find helpful;
Seek help early
If you are experiencing discoid lesions on your scalp it is important to have them examined and treated by a doctor as fast as possible to decrease the possibility of permanent skin damage.
“I had a huge patch last year; luckily it didn’t scar and grew back. I keep it short because of old scars and it makes my hair look thicker.”
Protect yourself against UV light
Whether you have scarring or non-scarring alopecia it is important to protect yourself from exposure to ultraviolet light. Most people with lupus are abnormally sensitive to UV light. You can find more information about this topic in our factsheet, ‘LUPUS and Light Sensitivity’, HERE.
You can reduce the extent of photosensitive rashes and other sun-induced problems to a large extent by keeping sun exposure to a minimum and regularly using sunblock. Sunblock should be SPF 50 or greater and effective against UVA and UVB light. It is advisable to wear a wide-brimmed hat and/or use a UV protective parasol when outdoors.
Artificial lighting (especially energy efficient, fluorescent lighting) can also emit UV which can trigger a response in people with lupus. You can learn more about the effects of different types of artificial lighting on people with lupus in the Eclipse section of our website HERE.
Information about a wide range of products to help protect you from UV exposure (outdoors and in) is available in the Eclipse section of our website HERE.
Protect your hair
Wash fragile hair with baby shampoo and use leave-in conditioner with sun block. Avoid adding more stress to your hair by restricting your use of heated tools such as curlers, straighteners and hot air dryers. Chemical treatments and alcohol-based styling products can irritate sensitive skin so are best avoided. Additionally, tight rolling, frequent brushing and pulling hair may increase loss.
“I now find I try to leave it alone. No colour or products. The more I tried to correct it, the worse it got. I reacted topically to shampoos etc.”
“I take biotin for the hair loss and I put extra virgin, all natural coconut oil on my hair and scalp overnight once a week to treat the scalp and dry brittle hair. It does seem to help.”
“Sometimes my scalp gets very sore and sometimes itchy but there is no change in the skin appearance when this happens, I usually use Tgel when this happens and the soreness goes.”
Keep a healthy, nutritious diet
Keeping a healthy, nutritious diet is an important part of managing your lupus. There are some foods which you should avoid and others that may help to keep you healthier. You can learn more in our booklet, ‘LUPUS and Healthy Eating’ HERE. 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.
Try to avoid stressful situations and find time to relax
Stress can often be a trigger for a flare of lupus symptoms and can also cause hair loss by itself. If possible you should try to avoid any stressful situations. Reach out to family, friends or colleagues if you feel under pressure and need help. Learning how to relax, regular exercise and good time management techniques can all help to combat stress. Learn more about managing stress HERE.
“Stress is a big [trigger] for me.”
Try a new hair style
If your hair loss is minor, try a new haircut. Consider a shorter “do” with layers to hide the thinning or bald patches.
“I bought some newly advertised John Frieda Luxurious Volume shampoo (only in the tiny holiday type tube) and I am impressed. There is no longer a blinding glare of my scalp seen through the front of my hair.”
“I keep my hair shoulder length with shorter layers on the top to help me gain body into my hair when styling.”
Consider a hairpiece, hair extensions or a wig
“The little princess trust gave me a wig which helped my confidence so much at 17/18 years old! When my hair started to grow back I used clip in extensions on occasions (too much wear will thin your hair out even more) and wore my hair up a lot in a bun as it looks thicker!”
Hairpieces and extensions can be added into thin areas to create a fuller look. Make sure that the hair piece is not too tight because tension on weakened hair can also lead to hair loss. Wigs come in a wide range of styles, colours, lengths and material.
Raoul wigmakers in London offer free, no obligation consultations for hair solutions. You can learn more about this HERE
Wigs are available from the NHS but patients need to pay for them unless they qualify for help with charges. Up to date costs of NHS wigs and exemption criteria can be found HERE
“My husband bought me a beautiful wig because it upset me so badly. This was fine until the weather warmed up; I couldn’t wear it without sweating profusely.”
“Wigs are fab and you can completely change your colour or look to suit your mood. It can be a welcome break from the daily morning grind of washing, blow drying, GHDs etc. before leaving the house! Check out Trendco and Simply Wigs. Be kind to your wigs, cheaper ones like Rene of Paris are fab but for every real hair one you buy you’ll need at least three or four cheaper ones as the nylon strands frizz easily. Lace caps are the best type of cap and buy ones that you can part anywhere. You will need a hairdresser to tweak the fringes etc. to suit you. Do not use any heat on nylon wigs! Make sure you have a wig stand, the correct type of brush, only use wig shampoo and conditioner, wash in cool water (never hot), and wash in the evening so it is drip dried by morning. Nylons frizz where rubbed, if you put your head back on chairs, head rests etc. They ARE hot to wear, imagine a bobble hat on in summer and a nylon wig-cap under the wig too! Read the instructions on your wig’s care and above all have fun with them, don’t be shy, swap and change.There’s no shame or embarrassment in being a wig wearer.”
Do not experiment with over-the-counter medications
It is important not to experiment with over-the-counter medications, like Regaine, without your doctor’s approval. These treatments are used for male- and female-pattern alopecia, which is a different type of hair loss than we usually see in lupus.
What emotional support is available?
“Even my fairly minor hair loss had a big impact on my self-confidence and self-image. It gets harder to pretend that you’re fine (many of my current symptoms are invisible so I feel I can get away from whatever is going on in my body – I’m more that this blooming illness!)”
It can be very challenging to adjust to a new appearance and everybody’s coping strategies are different. Alopecia UK has a very helpful section on their website which provides information and advice for dealing with difficult situations, meeting new people and unhelpful thoughts. You can take a look HERE. The charity also offers support groups and a range of information.
“I loved my hair and cried over losing it, but when I feel down, I remember to be thankful that it is non-scarring alopecia and that the hair will grow back at least. I am learning to go with the flow, and enjoy my new styles.”
If you would like to speak to other people with lupus for support, we have Regional Support Groups across the UK. You can find your nearest group HERE. We also have a network of trained volunteer telephone contacts that have lupus. If you would like to speak to a LUPUS UK Contact, you can find their details inside the back cover of each News & Views Magazine, or Contact Us.
“I lost about 75% volume last year and I found my rheumatologist really didn’t seem to care, which made me feel worse.”
Our leaflet, ‘Lupus and Depression’ provides information about depression in lupus and provides details for a wide range of services and support that are available. You can read and download the leaflet HERE.
“My friends, my daughter’s friends and my family, threw me a head-scarf party and we had a blast. I collected a wide range of funky, beautiful and delicate scarves, which helped me through one of my darkest times. My hair did grow back, after a year, but only on my head….and now it is dark brown, dyed deep red to keep me looking glamorous.”
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***
Thank you so much to everybody who submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article this time.