Hair loss in very common in lupus patients but is obviously caused by all sorts of other things as well, such as some medication, menopause, genetics, stress etc — or a combination of those.
Hairloss caused by medication tends to be reversible. Brittle hair also is common and many treatments, including steroids and immuno-suppressants cause hair to thin.
However, it’s always very distressing when it happens and often people don’t understand just how upsetting it can be. It’s bad enough putting up with constant pain but losing your hair - that’s often the final straw! Apparently hair loss in menopause can be one of the first signs with about 50% of women experiencing it. Hair loss can be subtle or very sudden.
I know this as I have suffered hair loss myself. I was sitting on the settee one day when I ran my hand under my hair at the nape of my neck. I thought ‘that doesn’t feel right’ and grabbed a mirror. To my absolute horror I discovered that I had bald patches near the nape of my neck. I hadn't realised it had happened as they were hidden by the length of my hair at the back and I hadn’t had any actual falling out of hair.
What I assume happened, was the hair fell out naturally and simply didn’t grow back. I’ve never had very thick hair, plus it’s also fine, but I knew I seemed to have extra thinning as I could see it when I went into a changing room to try on clothes. I’d catch sight of the top of my head in all the surrounding mirrors and would become fixated with the view of my head and how thin my hair looked. Feeling grumpy I’d then leave not buy the clothes! I haven’t as yet got to the bottom of my hair loss, I have however tried some products that help disguise the hair loss and I will mention these at the end of this article. The recommendations are purely my personal ones and obviously people will have different results, so they're just suggestions.
I decided that hair loss may not be life threatening, but sufficiently upsetting to want to do something about it so I finally convinced my GP to refer me to a specialist. They decided it should be a dermatologist at my then local hospital in East London. I finally received an appointment and told the dermatologist what had happened and said that I thought I had female pattern baldness and alopecia. He said I was exactly right and I did indeed have them both. He looked at my scalp and said pretty much 'well off you go then'.
I thought that can't be right and asked if there was anything that could be done and he said no. I found that a bit surprising and said well actually I have been trying minoxydil (which you can buy over the counter at most pharmacies) and discovered it by searching online. I wasn't really sure if it was working as I obviously can't see the back of my head very well and I also hadn't been using it long. He said 'ah yes you can try that'. Really!!???? I thought he just said there was nothing I could do??
He then told me what the information in the box says and that's basically: it works in some patients, it doesn't work in others and some find it makes the hair fall out more. He also said once you try it you have to keep on with it as otherwise it can cause more hair loss. Again - exactly what I read on the packet and that was all the information I got! Minoxydil is not a cheap option - even other generic brands come in at around £20+ a box - which would last around about a month - and you have to use it continually - but for me that was better than losing any more hair!
I wasn't happy with the first consultation at all, so asked to be referred to another dermatologist. Finally (after 6 months!) I got an appointment to see Dr Fenton a dermatologist, who has an excellent reputation.
My hair was definitely worse than it was as far as bald patches are concerned. The one small white patch I had at the top of my head at the back has spread to several places (usually very cleverly disguised with a bit of back combing and use of hair fibres, more on those later in the article) and my hair was generally thinner than it was, which wasn't good as I didn't have that much to begin with. The patches of hair loss at the nape of my neck, that were strongly suspected to be alopaecia areata, (most likely caused by stress) had grown back - a bit fluffy and thin but no big bald patches which was something at least.
This time my appointment was very different to the first one. My scalp was thoroughly examined under a magnifying glass and a full history of health and lifestyle was taken to see what could be causing the problem. Dr Fenton was extremely understanding and knew exactly how upsetting hair loss is, especially for ladies - as let's face it we don't have some stunning female film star role model with a bald head showing us it's ok to be bald like men do!
I also had a full set of bloods done (including hormonal levels etc) and something they called a 'hair pull'. I did say that it should have another nicer name as it sounded horrifying! It was exactly as it sounds - a nurse literally had to pull some of my hair out, in 2 places, so that it could be tested. She told me before doing it that apparently it would hurt - but if you have to have it done do not be alarmed. When she'd finished I said 'was that it?' It really wasn't much more than plucking your eyebrows and very quick, infact I thought she'd maybe taken one or 2 hairs - it was only when I saw the bundle of hairs in her hand that I realised that she'd tugged out quite a lot, for test purposes they need at least 10. But as I said it was really nothing to be concerned about.
It looks like my hair loss may have had a combination of causes. Lupus is certainly part of the problem as it tends to cause hair loss but also it had been exacerbated by being overstressed which triggered the alopaecia - again common in people with a tendency towards auto-immune illnesses like lupus patients are. Finally, the fact I went through the menopause with no drug intervention at all. I wouldn't have taken anything as I avoid drugs unless absolutely necessary - but mainly because I have anti-phospholipid syndrome (sticky blood) which meant I couldn't take HRT anyway, probably didn't help my hair, as often HRT seems to help hair and skin during the menopause.
I had to wait to see what the results of the tests show, which would be a few weeks. I also suddenly started to take a lot of interest in people's hair, which is a little weird as I never did before. I often looked at other ladies heads when I was standing above them on the tube - yes I know it's strange but I was becoming obsessed with hair. The interesting thing is that I never noticed before but thinning hair in females is very common, especially in females in the 50 ish age group so it looked like it's often hormone related.
My results came back and showed I was very deficient in zinc, which was quite a surprise. I was given a very strong supplement only available on prescription. The hair loss was still very bad, particularly at the top of my head round the crown area. I was very self conscious of this so decided to take the only path I could see left and that was to try hair pieces.
I did a lot of research and bought a couple of items, including a full wig which is really lovely and natural, but despite people assuring me you can't tell it's still so far removed from my usual style that people would know. It tends to get worn when I'm out somewhere where people wouldn't know my usual colour and style. That left me with how to boost my own hair on a day to day basis so people wouldn't notice, but I would feel better and I fell upon a piece that clipped on to the crown of my head.
It's described as crown volumiser and people tend to use it to boost the top of their hair and add volume. However, I discovered it also acts to cover quite a large area at the top of my head where the hair is very thin. I then scooped the rest of my hair back, mixed some of the hair from the around the edges with the volumiser so it gives the illusion that it's all mine, scoop the rest into a ponytail and instant hair! See photograph to the right.
It is so good that my normally very observant friends didn't notice anything at all. When I pointed it out they said - 'wow really? You can't tell' and wanted to examine it closely - they still couldn't detect it (and would have been honest if they could) so it does work as long as you can match your colour fairly closely. It clips in and feels very secure so as long as you have the smallest amount of hair for it to cling to it's fine. It's also very quick to put in place once you've done it a couple of times. Actually no matter how messy your hair it makes it look very neat and shiny!
I use minoxidil 5% in a foam version for females, which is now available to buy across the counter. It's not the cheapest answer as you have to use it forever, if you stop it's possible that your hair will fall out again. My hair definitely improved and the gaps were nowhere near as noticeable, obviously this takes a while as your hair has to grow back. My hair was quite wispy but eventually grew thicker.
Hair fibres are excellent as disguising thinning hair and are now available from most high street chemists and online. They are literally coloured fibres (you match them to your hair colour) that are sprinkled on the thin parts of your hair and they cover the scalp making it far less noticeable giving you the illusion of more hair and are definitely worth trying. If you find hair fibres expensive a good tip is to try dry shampoo, something I tested and found it worked well. There are now some spray on dry shampoos that are coloured, so if you can find a good match to your own hair colour that is also well worth trying, spray carefully in short bursts until you cover the patches. Or you can purchase coloured sprays that are meant to fill in gaps in the hair. It’s well worth investigating all these as there’s a lot of choice now.
I decided to carry on using hair pieces and invested in a couple of wigs, these days there's so many celebrities using wigs that they are much better quality and more natural and people don't think it's at all unusual for you to wear one, plus it takes seconds to do your hair to go out – total bonus!!
What happened next?
It’s been years since all this started and I’ve continued with minoxidil. I came upon an excellent local hairdresser and as my hair had improved a lot I decided to see if it might be possible to get a cut, maybe new colour and do away with the hairpieces.
My hair was still a bit thin in places, but vastly better than it was previously, so I was hopeful. I explained my situation and it was something the hairdresser had seen many times.
After a consultation she persuaded me to go back to my natural style which was curly, as it would definitely hide the gaps better than straightening it. Plus I needed to keep it free of any treatments that might damage it.
With that in mind, she also suggested a colourant that wasn’t going to harm my hair either. As I was feeling brave I told her to use whatever shade of colour she thought would suit me.
The result was fantastic. I now have a gorgeous red colour that really pops and gleams in sunlight, so it’s a vast change for me and I love it! It left my hair in very good condition and I often get people commenting on what a lovely colour it is.
So all is not lost. Here’s what I would advise:
Seek advice from ideally a dermatologist who can tell you if your scalp is damaged or not and if there’s any other reasons for hair loss. Ask about treatments such as minoxidil.
Look at your diet as good nutrition can vastly improve the quality of hair skin and nails.
Consider using hair pieces or wigs if your hair is thin as they definitely make you feel better and look at all the sprays and fibres available which disguise hair thinning very well.
Consult a good hairdresser who can advise on styles and colours to help disguise hair thinning.
Finally be patient as it’s quite likely your hair will return, so don’t lose hope.