Really struggling with hair loss. Any tips on how to cope??

I've just lost my hair and finding it really traumatic. It happened whilst we were on holiday in France and my GP thinks it may have been the sun triggering the lupus to flare. It came out in massive clumps and over half my head was affected. I looked very scarey and my kids were getting upset with all the hair coming out. i tried to be positive and regain control by shaving the rest of my hair off ( with the support of my family) so that i didnt have to see more clumps coming out. my husband has been wonderful ( he's also bald and tells me we're now like a matching pair!!) he also keeps reminding me that its only hair and having no hair will only affect my quality of life if I let it. The lupus could have targeted something much worse so we should be pleased its just my hair this time. Am trying so hard to keep positive but every time I walk past a window or mirror I feel panicky and sad :(

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  • snap i lose patches from all over my head, but i hold my hat up to you because i just cant shave it off, i backcomb and use clip in hair extentions to cover the patches, i also use bettamousse from consultant its pure steriods but it helps me , i also use hair thickeners/hairs/wigs i know wot ur husnband says and ur lucky as i am single , but like i say to my friend u expect men to go bald as some stage as it s the "norm" but with women its not and i think we have enough to cope with lupus without it effecting my haie, you havent said wot meds ur on , are they effecting you ? take care karenx

  • hi belee,

    I know how you feel, my hair started to fall out in 2002 when I returned from a hot country and suspected for years the sun was the trigger. I am now in a relationship and he is very supportive of my condition and the fact I am now on dialysis! Back in 2011 and also this year I shaved all me hair off. It felt liberating and the wigs fit nicely on my head. I cope with it because I embrace the variety of wigs I own and the fact that I can change my hairstyle dependant on my mood.

  • Thanks for your replies....the only meds I'm on are hydrochloroquine, nifedipine and diclofenac. ..... I def know what you mean kittykat68 - women are not expected to go bald Which makes it all the more harder to come to terms baldies need to stick together and show the world what this bas**rd lupus does to friends have been shocked since my hair has gone and i think theyve finally realised that lupus is serious and not just me moaning!.....on that note its a good thing ive lost my hair. if more people get an understanding of lupus then thats good.... am trying so hard to Think positive!!....Not sure if I like the idea of a wig at this stage charm I'm just wearing colourful scarfs when I go out of the just keeping fingers crossed it grows back and soon!!

    Take care and good luck


  • Hi Belee There are some fantastic wigs around these days if you fancy a change from the scarfs. They're light, washable and not very expensive. Check out They are absolutely gorgeous!

  • Hi girls, I have had this problem for over 40 years, clumps coming out and when it grows back it is still thin and I dread sitting under a light or having a photo taken as my bald patches just 'glow'. We went to a fancy dress party a few weeks ago and I wore a long blonde wig (my hair was like that 'till it fell out when I was 21) and I just cried , I had forgotten just how I looked with hair. My hubby did not help by saying "Oh you look beautiful, like when we first met" ! He meant it as a compliment but it back fired, so for my Xmas parties I am going to get a wig. SueD thanks for the

  • Hi there I have suffered with hair loss now for years :( but not to the point of it all coming out. I'm like u and try and focus on the fact it could be worse and that I'm quite lucky in some respects but being a woman we find our hair very important to our individuality. I think your very brave and wish you luck xx

  • Hi, Its really traumatic losing your hair, I lost mine when I was 26,I'm now 54. Mine fell out in clumps and I used to crawl on the floor so people couldn't see me through the window, I wore a wig constantly, nobody except my husband ever saw me without it, not even my children. I was paranoid, scared stiff that people would know it was a wig and talk about it behind my back. Then I started with Lupus but didn't know and I was struggling with the effects of that while trying to do a stressful job, that I had just started. It was really hot at work and I just decided that I had enough to worry about without struggling with the heat( wearing a wig is like wearing a woollen hat)and worrying that people could tell I was wearing a wig so I took it off and went to work the next day without it. I was shaking and scared silly that people would stare and or comment. Nobody was bothered. This was around 4 years ago and haven't worn a wig since. Now I don't even think about it and although some people look and some pull their children away (its always the parents have a problem never the children). It was the best thing I have ever done and wish I hadn't spent the best part of 24 years worrying about it. I even got a new partner when my marriage broke down (nothing to do with my lack of hair) and have since remarried and it doesn't bother him either. I say don't give it a thought, people will get used to seeing you around, walk with your head up, look people in the eye and smile. You are unique and beautiful and we have enough to cope with without obsessing about something so unimportant. Big gentle hugs. I am here and know what youre going through if you need a shoulder xx

  • Hay I'm also losing my hair, it's thinning out loads can see a difference everyday I wake up, but not got any bold patches yet and I hope I don't :( but it makes me sad just to see it thinning out falling strand by strand x

  • Hi, sorry to see you are having such a tough time at the moment I do know exactly how you feel I am bald now - it is not the first time, in fact it is the third. The first time my hair started falling out was my very first lupus flare nearly twenty years ago it was summer and I had not long had my daughter so the sun and hormones were both triggering it. I was absolutely gutted waking up in the morning and seeing my pillow with what looked like fur balls. The plug hole blocked each time I washed my hair or let the bath water out, but don't be too disheartened these days there ate all sorts of thickening lotions and shampoos and many of them work well. Alpecin which is widely available in shops and chemists. Or Thick and fuller which is available on the internet and quite pricey - but I know people who have used it and it is good. When my hair came back that time it came back lighter than before so I had chestnut hair instead of dark brown. It came back really thick and in great condition.

    Then a few years later it started coming out again along with other sympoms of a flare and was triggered by stress and the sun but did not last as long that time and I was back in remission after only a little while and nobody really noticed my thin hair very much that time. When it came back it was long thick and very blonde and could have been called my crowning glory!

    Then this time I have gone completely bald but I have been having a particularly nasty flare along with a few complications and have been in and out of hospital over the last couple of years a few times. My rheumatologist started me on Methotrexate I am on 15mg weekly and take 5mg of folic acid twice weekly to help my liver cope with the methotrexate as I have a few liver problems but feel better than I have for ages and have started getting a few tufts of regrowth.

    One thing that I felt very important in keeping me from going totally bomkers on occasions was my sense of humour. I have laughed at myself and when I went to a fancy dress went as a ghost painting my head white and wearing a sheet that I made into the shape of a ghost. I am a biker so is my partner so I wear bandanas most of the time and a little boy on a bus asked me if I was a pirate I said my Dad was Jack Sparrow, there was a skull and cross bones on the front of the bandana so I had to play along! He loved it. ;-) My partner and many of our friends shave their heads and we got referred to when we went out one night as a pair of boiled eggs but we laugh it off. It does look like my regrowth is silver not gold this time so I am going down in valuation, must be an age thing. See what I mean it comes naturally (hence my name) it is difficult for children to accept when my daughter was little she used to say "Mum cover that up." referring to my head but she is fine with it now. They need a little help to come to terms with it like you, talk about it with them if they get upset let them talk to you about it and let them cry if they want to but it is best to get all of your feelings out in the open and that is very liberating.

    Good luck to you all as a family unit

    Madmagz x

  • Thanks for all your lovely replies....I'm feeling sooo much better :)


  • Hi hon try biotin and take atleast 5 tablets a day keep at it. Also 1 folic acid a day and put castor oil over your scalp. Please keep at it for months hope it works. I use to clip extensions in and they looked great :) i know its so difficult but try remain positive thats what keeps me going xxx

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