Lupus & Hair loss

Every time i am brushing my hair massive amounts of hair are coming out. It's almost as if you could make a wig after i've finished brushing my hair. I haven't got any bald spots from where it's coming out.

It does get me quite down when everywhere around my house is my hair from where it has fallen out. I know i can't go anything about it.

I was just wondering if anyone else is have this experience and what they do about it.

21 Replies

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  • Hi Loulamb

    I feel your pain, I too am losing hair everywhere. I brush it and my hair is everywhere. Thankfully I had very thick hair but I still have lost about 40-50% thickness.

    I spoke to my Rhuemy who didn't pay much attention to me. I'm not sure if it's just the lupus alone (although a rare side effect of hydroxychloroquine is hair loss) plus I have a problem with thyroid at the mo, so I don't know what is causing it 😭😭😭😭. My scalp was burning too but I've managed to stop that and the pain with t gel. But I'm still searching answers on how to stop it from happening.

    Xxx

  • My hair was very thick and long and now it's gone quite thin . I'm going to speak to my rhuemy when I go on the 16th. I'm taking methortrate .

  • Yes mine very thin now too.

    My rhuemy mentioned going on methotrexate but then kinda left it! I'm being referred to st Thomas' and guys so hoping they will be more helpful.

    If you get any answers please let me know. πŸ˜€πŸ˜€πŸ˜€

  • Will do

  • Hi, I feel for you, I really do. When I was 23 yrs old I found biggish patch of missing hair with a dry crusty type jest on, the consultant took a biopsy from it and diagnosed lupus. As I was young she very gently had to break it to me that when hair loss occurs through lupus unfortunately it never grows back. Luckily for me I have the thickest natural curliest of hair so you could not see my patch anyway. I just had to x fingers no more came. So, imagine my own amazement and my consultants and doctors when my hair grew back, they were astonished as it wasn't,t supposed to be, they had no explanation. However all was revealed eventually when my father had cancer treatment, not one hair came out as usually happens and my sister had massed be hair loss throw go trauma was told it would not grow back, eventually my dads cancer docs looked into it and discovered we had double rooted hair, how is that for luck. So according to my lupus doc years ago it doesn't grow back apparently. Hav a word with your doc , he should be able to tell you if it will grow back, it was years against when it happened to me and times have changed, different treatments etc.

    I'm crossing my fingers for you and every other sufferer getting hair loss. Good luck.

  • I'm only 16 it's very depressing see the hair come out with every brush . Luckily for now I have not noticed any patches

  • I have hair loss,too.I am on Plaquenil, well the generic version.I have fine hair to begin with...so I have a lot less hair now.I'd say I lost almost 50% already,and I've been diagnosed not even 2 years.

    Don't know what to do,if something can be done that is.

    I read an article the other day about the appendix, you know the organ we all thought doesn't do anything??!!

    Well they are now saying it's needed to help the immune system,the gut when it needs to be.So I think no wonder.. I lost mine about 5 years ago..maybe part of the Lupus puzzle!

    Hoping you are well...dunkxx

  • Hi Dunk

    I lost my appendix too last September, but I'm pretty sure planquenil is causing my hair loss.

    Leta hope we get answers for everyone's sake. Feeling constantly crappy is bad enough but then havig the added hair loss is just taking me over the edge. 😁😁😭😭😭

  • Hi Bacardibabe76.... Like we need hair loss,too!I figured it may be the Plaquenil... it is disheartening for sure.

    So you lost your appendix, too.

    I didn't put the 2 together until I read about the appendix on the web.I lost mine about 5 years ago.The surgeon remarked it is the most infected appendix he ever seen...lucky me.

    I had no pain from it,just the day it was removed.

    I hope we get answers, too!

    Take care and thanks for reaching out.much appreciated! dunkxx

  • My appendix had been rumbling on and off apparently. But finally gave up just after my c section πŸ˜‚.

    Take care and hope you stop losing your hair too. Xx

  • sorry to hear about your hair loss. I can really empathise with you as I used to lose huge amounts of hair on my pillow at night and in the shower. I found it really upsetting seeing it all dropping out on a daily basis and spent a huge amount of time in tears. I lost about two thirds of my hair and now have bald patches on my head. On my husbands suggestion I shaved what little hair I had left off so that I didn't have to see it falling out all the time and I wear pretty head scarves instead. I realise it wouldn't be for everyone but for me I feel like I regained control. I now don't have to watch lupus making my hair fall out every day. I just shave it off once a week! I still have days when I look in the mirror and get upset but I have to think to myself that hair is just hair and as long as lupus is not attacking my organs and I can still do what I want to do, I can cope! .... Not everyone loses lots of hair though so stay positive. Wishing you all the best. Take care xxx

  • I'm on methotrexate and losing my hair, it can be one of the side effects, the advice from my rheumy was to increase the folic acid I take and this should help. Hope this helps! x

  • I'll talk to my rhuemy about it when I go

  • Hi Ann1e..thanks for the folic acid tip!will ask my MD about it.

    I do know things can be worse...Thanks for your help and take care.dunkxx

  • This happened to me when I was in hospital on drugs 15 years ago and I had to get a week in the end because it continued for several months until most of it had gone. I keep it cut short now and wear a wig or hat because it comes back and then goes again when I over do it or find a situation stressful.

  • Same here but i have visible thining on my hair line on my forehead and half of my eyebrows stopped growing

  • Dose any of yalls scalp itch really bad mine dose

  • Hi there

    I dofeel everyone's pain. I lost all my hair through LUPUS and i was told aftre they took a biopsy at the back of my hair and l was told my hair will never come back. I wore wigs for 4yrs but now i havea full hair head. it was heartbreaking. thogh my hair is so thin and curly and on my hairline where the wig band was still show no hair but i am glad i have the hair back.

    Mine was diognised by Dematologist. So keep trying you never know.

  • Hi went to see a dermatologist about my losing my hair. He said my ferrous levels needed to be between 60 - 80 before my hair will begin to grow. Ask to have your ferrous levels checked.

  • Hi I don't know exactly what you are going through but I have read some of tour recent posts and it teally struck a chord with me. I too was diagnosed with SLE in my mid-late teens and a lot of my hair fell out and it was really hard. Even when it was growing back trying to make it look nice was a nightmare! I have thick ginger hair so a ginger afro was not very attractive! Fortunately mine did grew back but last year I had a relapse and a lot if it came out again. I work in very close contact with the public and made the decision to try wearing a wig it was one if the hardest but best decisions I could have made. I have had nothing but nice compliments from family, friends and strangers alike and it has really boosted my confidence. The first time I went to the 'alternative hair shop' I was so nervous but the owner was lovely and she had alopecia herself and was so understanding which helped. I've gone from being very self conscious to having different hair for work, weekends and special occasions and noone can tell its not my own (unless I tell them!) my friends are even jealous that I don't have to spend ages on my hair for going out! I know its hard and I don't know if any of this will be helpful to you but I hope it is and if you have any more question please don't hesitate to ask. Stay strong x

  • I have lost all of my body hair from my neck down. I know how you feel.Β 

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