We will be continuing our ‘Topic of the Month’ series in April by discussing, ‘Hair Loss’
Hair loss is a common symptom of lupus, with the hair often thinning or becoming patchy when lupus is active.
We’d really love to hear if you have any tips for coping with hair loss. Have you found anything which helps to prevent or reduce the amount of hair loss you experience from lupus? Perhaps you've had your hair styled in a particular way which helps you feel more confident? Maybe you've tried wearing a wig?
We would like to hear all of your tips and experiences and we’ll compile them at the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/
All submissions will be anonymised.
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I am sorry, I had to laugh when I saw this, and no offence is intended, cause my only tip would be.....dont have cyclophosphomide treatment....... lol
When my kidneys failed, this was an option to keep them fuctioning. It was my only option at that time.
I had beautiful long blond hair...blond hair everywhere....
Within the 3 month treatment I lost the lot.... every bit of hair....everywhere and I mean everywhere.
After coming to terms with this devestating period in my life, as I was still working, my friends, my daughters 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 dealing with my stalker.
The treatment dud not save my kidneys, I lost both, had dialysis for 3 years and a transplant of one BUT losing my hair enabled me to gain a lot more, including a wonderful collection of scarves.......
My hair did grow back, after a year, but only on my head....and now its dark brown, dyed deep red to keep me looking glamerous.
Thank you for sharing your experiences amandalilley. Unfortunately a number of lupus treatments can be causes of hair loss in addition to the disease itself. I'm sorry to hear that the cyclophosphamide didn't work for you. It is important to bear in mind that everybody with lupus responds to treatments differently, so it may work well for others. Did your consultant mention that hair loss would be a potential side-effect when they prescribed that treatment?
It's lovely to hear your positive attitude shining through as it usually does.
Hi Paul, I do appriciate that everyone responds differently and I was just unlucky. I thought it might be good for people to read a positive reaction from hair loss.... the fact that it did not work for me is neither here or there, its was how we handled a very dufficult time, espicially for a female that mattered, hence the scarf party reference.
My consultant mentioned that I may experience some SLIGHT hair loss, so when I lost it all, from everywhere it a shock.... I still have no eyebrows... lol.
You ask for people to share, I just did that and i am positive that the lovely people who suffer from this dibilitating illnes would know from experience that not everyone has the same symtoms, responds to the same treatments and takes individual experiences as a true reflection on what may or may not happen to them.
I am glad my positivity is helpful and hope my lighter side to a delicate subject gives people the confidence to debate.
I've had fairly minor hair loss.I ended up with thinned hair on the whole top of my head.
I was "lucky" that I had loads of fine hair to start with so it took a long time to become noticeable to others. in fact most people didn't believe it was an issue. Regardless it's still worrying especially as it wasn't taken that seriously and you don't know how much you will lose or whether it will grow back.
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!)
Although I can't fault my GPs they never even looked at my head!! It didn't seem important to anyone else but me. The hair was so thick on the carpet where I dry my hair that it would clump up if my feel were damp (hairy soles are not attractive - I need to hoover more!) there was hair all over the house, in the cars, on my desk at work but nobody seemed bothered.
I've got no good tips to help cope or treat it sorry just ones that help you feel you are doing all you can and fighting back. I tried styling which thickening mousse to mask it, moving my parting and getting more layers. I tried expensive caffeine shampoos and tonics and used betnovate scalp treatment (the dermatologist actually had a look!). I stopped tying my hair up in case it was putting strain on the roots.
I'm not sure what if anything worked but I've just noticed in the last few days a load of short whispy new hair around my hairline.
I've now realised that my hair falls out on a two yearly cycle and each time it gets a bit worse.
I'm not diagnosed with lupus though (yet)!
I would willingly wear a wig if I felt I wanted to - I have a close friend with alopecia so I know it's not any easy solution.
Thank you for sharing your experiences Polly2Cats. I've been hearing from a number of people that their doctors didn't seem to address the hair loss. Did you mention it to them at all?
Do you notice any other symptoms crop up at the same time in your 'two yearly cycle'?
Yes I mentioned the hair loss consistently to the GPs and they only seemed interested in "medical symptoms". As I was feeling unwell it seemed like a secondary issue probably caused by something else so I think they were trying to find a cause before they could provide treatment.
I think I was probably suffering with fatigue (I've had it for YEARS but never as debilitating as at present) and other stuff like night sweats, rashes (mild compared to lupus rashes), things that could have been mistaken for menopause. I kept feeling as though I needed to increase my thyroxine. I often had a flare of vitiligo too. Sometimes altered sensation in my legs.
Looking back now I've had lupus symptoms albeit quite mild for at least 10 years.
My hair falls out all over so looks thin. Its worse when my iron level drops. I find I try now 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 and also from inside when I'm low. It picks up sometimes in between but I've given up on long hair now. A bob makes it look thicker. Choose your hairstyle wisely.
Thanks for sharing your experiences johare. Do you have any iron supplements or a change of diet to try and prevent it dropping now? Have you found leaving your hair alone has made it any healthier?
I take iron supplements but my HB goes up but not ferritin which seems to be the problem. It literally rises and falls with that! It also gets brittle and I get under nourished hair which breaks. Leaving it alone is best as I react to most things now and the less I antagonise my body the better. Although my hair is important as to a large degree its what others see first, I feel now I prefer my hair falling than other parts of my body giving up. I do find however, it is an indicated of other things wrong.
I do experience hair loss and painful itchy scaly scalp at times. I take biotin for the hair loss and i put extra virgin all natural coconut oil on my hair and scalp over night once a week to treat the scalp and dry brittle hair. It does seem to help some.
I suffered with terrible hair loss when I first started taking methotrexate orally, so much so 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. I then decided enough is enough and my husband shaved my head, removing the scraggy bits of hair that were left, surprisingly I felt elated and it did look better like an ageing grey punk rocker. I now use methotrexate injections and my hair has luckily grown back again.
I must admit many friends have suggested I go back to the short grey style but I think I will leave it a few more years and keep colouring it back to brown for now at least.
Thank you for sharing your experiences Karen. Have you ever experienced hairloss as a symptom of lupus or has it always been a side-effect from treatment? I'm glad that you had quite a positive outcome despite your initial upset.
Hi Paul, I think mine was mainly from the medication, when I am flaring it tends to be very dry and snaps off easily so I tend to be more careful brushing it and use a lot more conditioner when I have washed it.
Thank you for sharing Karen. That's really helpful.
I'm not sure if it was because of hormones or autoimmunity or allergic dermatitis/ eczema but I lost all my hair when I was about ten and it grew back and then came out again so, from age 10-12, I was mostly tufty at best. I was also covered in eczema and rashes. Then after giving birth to my third son I went completely bald right over my crown. This was described as post gestational alopecia. I treasured each new growth as though I'd won the lottery as it came grew slowly back - paler than before - from pale auburn to ash blonde.
I'm paranoid now about each medicine I try but I took methotrexate for two years with Hydroxy and I lost no extra hair at all - in fact it is far thicker and nicer now I'm post menopausal than it was when I was younger. I thank my lucky stars for this because my scalp is often scarily itchy. I really try to avoid scratching it and wash it only once or twice a week using a small amount of medicated shampoo and nothing else. I don't use a hair dryer, let it dry by itself at night and usually wake to a nest but I have a big hair brush that I brush it with gently once in the morning and that's it. I get it trimmed every three months.
If my hair ever falls out again I would defintely go to town on scarves and vintage hats rather than a wig. My mum bought me a wig as a kid and it itched my scalp like the plague! Probably wigs are made to be much more comfortable these days mind you. Anyway I never take my hair for granted now or let anyone spray it or use any chemicals beyond a small amount of medicated shampoo and an occasional squirt of Betacap.
Thank you for sharing your experiences Twitchytoes. It is interesting that you didn't experience any hair loss from methotrexate - it just shows how everybody reacts to treatments differently.
You are welcome Paul. Interestingly I've just spoken to a dietician at Coeliac UK and described what I suspect were formative historic events for me. She agreed that being bulk fed on semolina from six weeks old most probably has had major consequences for my immune system - including episodes of total alopecia. Alopecia can be as much a symptom of Coeliacs, Hypothyroidism as of Lupus or a consequence of taking drugs such as Methotrexate. So I think allergies and food intolerences, particularly to gluten, probably account for many more cases of alopecia, than is yet recognised by the medical profession.
I was finding hair on my pillow in the mornings, mentioned it to my gp and she pretty much dismissed it, said it was normal and hers came out too. Not a lot of help. It wasnt until I was sent for blood tests that came back positive for mild SLE, and I read the leaflet the doctor gave me, that I learned it was a sign of lupus
10 or so years of hydroxy and its stopped coming out, in fact it stopped quite quickly. Although its as normal on most of my head, its still a bit thin on top...c'est la vie..la lupus vie and my son reassures me its "not that bad, its fine"...fine being the operative word....lol..scary though when you dont know whats happening to you
I mentioned lupus to the same gp a few years later and asked if she was familiar with it...not much she said..Well look it up!!! is what I wanted to say but I said a polite thank you and left. Its time our gps were educated
I'm glad to hear that the hydroxychloroquine helped to stop your hair loss, even if it is still a bit thin on top. Unfortunately awareness and understanding of lupus amongst GPs is a problem. We continue to campaign and provide them with information so that they will recognise the signs and refer possible cases to a rheumatologist. Unfortunately because of the wide range of conditions they need to be able to consider, they will very rarely be experts in less common conditions like lupus.
Hair loss and lack of hair growth (my hair didn't grow for years, my hair length in my passport photo from 2000 is the same length as my hair is now!) has been a given for me. As I'm mixed race, most GPs don't see it as a problem, thinking my hair is perfectly fine and thick, but puffy doesn't equal thick! I have some bald patches still but it isn't as bad as it used to be as I've been taking selenium (rheumatologist's advice that people with RA/Lupus are often low on selenium). I used to eat Brazil nuts for extra selenium but found that wasn't working as well due to digestion issues, so now I take capsules. There's been some improvement, but I still have a few thin spots toward the front of my forehead and along the sides.
I have a friend who owns a beauty care business and she was able to find some oil combinations I could use on my scalp to control the flaking, which helps with hair breakage. I've also got some wigs which I wear just for fun, or clip-in hair when I want a bit of volume and want to look glamorous when I go out.
I use evening primrose and jojoba - be advised evening primrose has a short shelf life and can go rancid (I bought some recently from another shop and knew it was off the instant I opened it!). Evening primrose is very effective and jojoba is very close in molecular composition to the body's natural sebum so I use it a lot, although it can be pricey. I use jojoba on my skin as a cleanser, to hydrate when I have a breakout or a rash.
Another oil which works very nicely is coconut oil, which is another great option and I tend to use it for everything as I often have dry skin due to having to keep indoor heaters on.
Buying wigs - well I am a bit of a geek so I buy a lot of Japanese cosplay wigs from various places; I've got purple, white, silver, etc, and I wear those for fun. In the UK, I buy my clips in from: cliphair.co.uk Quality is very good and I am able to find a few things that work with my mixed race hair. For people of colour, manedivas.co.uk/ has some very good stuff. The prices are good, the hair is usually real hair and needs some care to keep it in good condition, but by tending it properly clip ins will last about a year before they need replacing (mine are due, actually)
my sister was having hair loss also with this disease . so i thought ok so this disease takes away our bodies vitamins and minerals . so i got her to take trace minerals , quasi vitamins and all the regular vitamins that the body needs to be healthy , then i did the diet of fish meaning wild caught fish salmon , perch cod , etc , alot of fruit and nuts and seeds and very low red meats , free range turkey , chicken or organic meats , and alot of veggies
i studied what each food had in it and charted the foods , after that my sisters hair stopped falling out . i also took away harmful toxic shampoos and washed her hair with natural products
My 4 year old likes to go round telling me there is too much of my hair everywhere and caught up in the Hoover etc.
My hair loss was quite bad last year, doctors tried testing me for stuff and Rhuematologist brushed it off and he referred me to guys who also brushed it off. Luckily I had very thick hair to start with. I started with new growth about 6 weeks ago but in the last week it's falling out again. I have grown my hair long just so I can put it up in a pony tail to disguise any thinning spots.
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.
I think it's a symptom that the consultants don't really pay much attention to 😭 And I find that it's bad enough I feel rubbish I don't want to look it too 😁.
Thank you for sharing your experiences. I'm sorry to hear that your consultants are not taking your hair loss seriously. When your hair started falling out again last week, was that accompanied by any other symptoms?
Faint , constant headaches and generally feeling off since Xmas again. But I've started hurting more all over last few days, doesn't feel like it's my just my joints, feels like my whole body hurts now. 😫
Hi yes I am concerned it may be the onset of a flare but My GP has run tests and I'm low on b12 and vit D and so being replenished at the moment. so I'm hoping this will help a little 😁😀 but to be fair I'm never totally free of symptoms 😀 X
I was late teens and told it was because of stress,being vegetarian,being a young mom and why was I worried about it as I had long hair (I could sit on it as that long)
After a few years of it thinning,not thinning (always more from one side) it was found I had a very enlarged spleen and was anaemic which then became a chicken and egg scenario as anaemia can cause spleen to enlarge and an enlarged spleen can cause anaemia.
One doctor did apologise later that this was a real pointer for lupus and should have been investigated.It did grow back a little thicker but every flare it thins out until over.
It is such a shame that such things are ignored for so long as a vain thing or not important where as hair loss does normally mean an underlying health issue of some sort.
My youngest son who has developed a malar type rash is also suffering hair loss but as blood tests negative we are going down the dermatology route for skin biopsy etc as they believe that these symptoms are lupus related and aren't as blood results obsessed.
Thank you for sharing your experiences. It seems that hair loss is often not taken seriously as a symptom, but as you say, it can be indicative of a underlying health issue and should be investigated, especially if there are other symptoms too. I am sorry to hear about your son's health and difficulty getting a diagnosis for his symptoms.
I have very thin hair, I mean almost invisible to the naked eye, well, except on every black piece of clothing in the house! The standard joke now is who HASN'T got a hair on them. My hair has thinned in the last three years. I have about three inches at the back of my head which is yet to thin completely so it is marching backwards, if you see what I mean, in a uniform fashion, (yipee?)) I am on Azathioprine for AI Hepatitis and as an immunosuppressant. I was on Hydroxy now Quincloric for the Lupus. My hair thining has been relentless. I tried growing it and tying it back but that emphasised the problem. A cut into a bob improved things.
Obeying the lure of the TV box, I bought some newly advertised John Frieda Luxurious Volume shampoo, only in the tiny holiday type tube. I am impressed. There is no longer a blinding glare of my scalp seen through the front of my hair. I do use a headband to disguise a bit at the front. It does not feel gunky though I need to wash it one day earlier. I will take that all day long. Other products just made my hair sticky. I don't use mousses etc as they can weigh hair down.
It is a b****r when hair loss etc is dismissed as a none problem. It is when you have it, distressing when you dont, adding to the ever lengthening list of things that bring dismay and tearfulness in trying to cope with this complex condition.
Hope that helps someone. I will defo try the oil treatment too as my head itches terribly off and on.
Hi. Everyone used to say how thick my hair was but over the last couple of years I have noticed how much thinner it has become. I now have lots of whispy fine hair that sticks out. I was told about Regain for women by my dermatologist, but have not tried it yet. When I mentioned this to work colleagues they thought it very amusing. Hurtful, as I loved my thick locks and sad when I brush my hair and thick with strands and it just seems to come out so easily.
My hair loss is so bad that you can see my scalp. I have not got no bald patches. I know I've got under active thyroid plus APS, but all is under control. So could there be another under lining problem ??
Hair loss can have various causes, including a number of conditions such as lupus or stress and it can also be a side effect of some medications. You can learn more about hair loss and how to manage it in our blog article here - lupusuk.org.uk/coping-with-...
I read the link you sent me and it was extremely helpful. As my mum has Lupus and I asked my GP to be tested for it, she told me that I not got lupus, she did not know anything about APS, so I don't know if she would know about Lupus and what sort of test I would need as I have read on the APS site on here, a nirmal Lupus test would not show up properly, so what test should I ask for.
As regards to the hairdos, I have got under active thyroid,, which can cause hairloss, and my thyroid was not tested for over a year, that's when they had to up my thyroxine, but my hair is still falling out. I have not got bald patches, but it's thinned out drastically, it's all broken and it's all around the edges, the front hair line is reseeding badly, the sides, and the back of the hair line. As for skin lesions, I have a little bit on my face, the back off the hand is the newest one, and the black raised marks mainly on the bottom of the legs across and around the front of the ankle. But I also suffer numbness (esp one leg below the knee). The rest feels like pins and needles. But when explaining to my GP, it's just thobbed of as me being a complex case.
Have you got any ideas what I could do. I do have 2 different nerve tablets which also used for people who also suffer with depression, but mine are not for that , but is used for (RSD), which they now called "chronic pain sufferer" which I find a bit degrading, as it was orginally diagnosed by the Nerologolical hospital in Queens square London.
So could you help me out with any of my problems, give me some advice.
What was the reason your GP gave for you not having lupus if they haven't tested you? Usually the main test a GP can do for lupus is an antinuclear antibody (ANA) test. This is not a definitive test for lupus, but it is positive in 95-98% of lupus patients, so is helpful evidence towards a diagnosis. For further investigations and a diagnosis you will need a referral to a rheumatologist.
If you want to learn more about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
MTX injections plus the disease itself really left me with thinning hair - and flares ! in between it calms down. If you have to dye your hair, I'm quite young with naturally black hair so the greys are very obvious I would recommend Natualique which is very gentle and I used whilst on MTX, Pred etc
I also use L'oreal fibrology shampoo, which doesnt cure any hair shed but gives the illusion of thicker hair. Iron and general good diet helps - But when it falls it falls.
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