Hair loss STILL!

Hi All, I have been treated with plaquenil for 6 months now and been on imuran and 5mg prednislone for just over two months. My hair has been falling out for about 4 months but the last couple of months it has happened very quickly. I have 3 massive bald patches and the rest of my hair is very thin - I have only bout 20% of the hair I had before and I can't hide it anymore which makes me really self conscious and upset everytime I look in the mirror when I get ready to go out in public.

Anyway, I really hoped the hair loss would have stopped by now but when I run my fingers through my hair (that I have left) I still have a heap of strands coming out. I was wondering what other peoples experience is with hair loss - do you think it is the lupus or the meds that are making my hair fall out still??

49 Replies

oldest β€’ newest
  • I Feel for you .. I am battling it also.....after 2 years almost ...i found out i had high cortisol and low free t3 and low testosterone....and low dhea.....any can contribute to hair loss.....i know how you feel....i would suggest if possible go to one dr after another until someone listens...i wish i had did that sooner......much sooner.....so dr changed my thyroid meds and put me on bhrt hormones....and it is a wait and see thing....

  • I have dreads and worked hard for 2 yrs on growing my locks. I be dam if I let lupus destroy my beautiful locks. IM STRONGER THAN LUPUS!

  • It's so distressing........ and similar to a lot of people on this forum I find this aspect of my illness the hardest to cope with. I have been down every avenue to try and fix it, I was horribly anaemic and iron supplements gave me a little boost but I have had to come to terms with the reality that I cannot control it, my hair is a barometer on how my body is feeling so it comes and goes but is never with me long enough to give me back my confidence. So now I wear a hair enhancer which has transformed the way I look and feel, it took me a while to find the right one but I would urge you to visit a specialist hair retailer and try on lots of products, there will be something out there to make you feel more confident whilst you pursue the medical solution which I hope you find soon.

  • Thats why i refuse to take so many bottles of lupus meds. Now watch one day they have a class action lawsuit on the meds that ruined our hair. πŸ˜„πŸ˜‚πŸ˜­

  • HI Paulajp, yeah I didn't expect this to be quite so hard I actually have been through it before when I had my first flare at 12 years old. It was a big flare and I was put on cyclophosphamide and high dose prednisolone just as I started high school... all my hair fell out and I was very swollen... lets just say I had a pretty traumatic start to high school - teenagers are not very sympathetic to say the least. So I thought if I got through that, this would be easy. I bough a wig the other day but I'm not very happy with it and that makes me depressed too because I had high hopes that it would make everything better.... oh well I guess I do need to shop around some more.

  • How awful for you to experience high school like that! Kids & teens are so cruel & I don't understand why. youd think parents would teach them better than that.

    I had hepatitis most of my life so I was always the smallest in every grade which made me a target for bullies. I got called every short name in the book & was never really taken seriously for a long time because I was also extremely shy. I'm still the loner wallflower type but as an adult not made fun of for being short, lol!

    But I'm so sorry for your experience! Hugs!

  • Hi Emily, I went through a stage of battling severe hair loss last year - every time I ran my hands through i would end up with handfuls of hair. I was having to take OxyContin at the time and once I came off that it stopped falling out. I also have plaquenil daily and my thyroid levels were too low - it's been a bit of a balancing act with thyroid men's but I've got baby hairs regrowing in the last 2 months? Have you had your thyroid levels checked? Truly hope you get the right help - it's so upsetting when we lose our hair x

  • No Ive never had my thyroid checked but I've seen a few posts on here about thyroid issues. Do rheumatologists do these checks or do you have to push for it?

  • My Dr initially checked my thyroid because of symptoms I was having after my first baby at 21 - just my GP. At that stage it was very overactive, but after treatment it went hypothyroid and mybgp now monitors my levels regularly.... too low and my hair starts falling out. Your gp should be running it as a standard blood test I think? Not sure how drs work in U.K. Compared to nz sorry.

  • I was going to ask about your thyroid as well. I lost massive amounts of hair & it thinned drastically. I was started on 3 meds after 2 yrs of different doses & down to one med it was finally regulated.

  • I think its the meds combined with stress. I stopped taking placquenil it made my stomach cramp so bad and I had diarrhea. My hair had a few bald patches. My hair stopped falling out after I abandoned that crazy meds

  • Ive lost my hair (95%) of it on and off for 4 yrs now. Its grown and then fallen out again in clumps ... since being on Methodrexate my hair has stayed put but it is very thin and wolf like in the front. When I lost mine I had to shave it off and wear a scarf/bandana .. I lost my eyebrows, eyelashes and hair from other parts of my body ... I can only speak for myself ... other people have had the reverse affects on Methodrexate ( I took the tablets first and now have injections) My eyebrows have grown back but still waiting for my eyelashes :) I have permanent hair loss else where, it will never grow back. Have you seen a Dermatologist for your hair loss? I know how heartbreaking it is to lose your hair as Ive suffered it ... it was one of the first signs of my Lupus ... If you are losing it in clumps then I would say its the Lupus, usually the medication makes it thin out but not fall out in clumps ... Have you spoken to your Consultant about your concerns? I hope you get to see someone who can rest your mind and explain xxx

  • Hi Elle, this flare was first diagnosed by a dermatologist because I got a rash that I didn't think was lupus because it did not cover my cheeks and nose but it turned out it was the discoid form that has emerged at the same time as the SLE flare... so I have hair loss due to lesions (which I know wont grow back) but I also have generalthinning an bald patches not due to lesions. I have mentioned the hair loss everytime I have spoken to the doctor but I don't get much response back from them, I don't think they really care about it and they are more worried about getting the lupus under control - which I understand but a bit more communication would b nice!

  • I also have Discoid Lupus but I also have a Complex Lupus (ANA negative, yet signs of SLE) I have lost my body hair without Lesions and although Ive had lesions on the head, I lost all my hair without. Its how your immune system works ... I can understand about communication :/ It has been a nightmare to get anyone to explain but I finally got my Rhuematologist to put his hands up and say it was beyond him and he was more than willing to send me to London. Ive been treated by the Derma, who has been wonderful as it was her that sent me to the Rhuema after telling her about other symptoms ( the doctors were no help with diagnosis) Its frustrating and on top of that you have all these symptoms that you just want sorted ... I dont think they realise the trauma and emotions people suffer after seeing all their hair etc fall out .. It changed me as I wasnt me anymore when I looked in the mirror .. the dr sent me to see a Therapist but it didnt help, they have never gone through it, so they did not understand ... I really hope someone listens and you are treated ... will be thinking of you XxXx

  • They aren't taught bed side manners the way they should be. I find docs here in the US are the same way. They're so focused on the illness & how it responds to the meds that they're oblivious to us as a person not just the carrier of a disease.

    Most seem to be this way & on a rare occasion you get a doc that truly car about the human aspect & how we are being effected no only physically but psychologically as well.

  • Hey Emily, I feel some drs are just so dismissive about some of our symptoms eh?! Hair loss may seem nothiyto them in comparison to the bigger picture, but if it's bothering you then I reckon that's important Enough and they could at least show some care and concern for our worries about things like losing hair πŸ˜”

  • Hi Emily00,

    I'm sorry to hear that you are still struggling with severe hair loss. Hair loss can have a number of potential causes in lupus and it can be difficult to distinguish. Have you seen your consultant recently? Did they say whether your lupus was particularly active at the moment?

    We have a blog article about lupus and hair loss which you may find helpful. You can read it at lupusuk.org.uk/coping-with-...

  • Thanks Paul, Yes, my lupus is active at the moment (after 20 years of remission - so I count myself very lucky) I have been seeing a registrar and she has just recently being talking to her senior consulatant and now i am getting phone calls and bloodtests every week - but prior to that the treatment and testing was pretty slow compared to my previous experience - I did feel the registrar was perhaps not as experienced and didn't hit it hard enough when the first symptoms started.

  • If your lupus is active at the moment, that could potentially be the cause of your hair loss. It may be that a change to your treatment regimen to bring it under control could help with this symptom. I hope that they are able to get it under control soon for you.

  • Does peri menopause & menopause effect women with lupus like that?

  • Fluctuations in hormones can often be triggers for increased lupus activity and flares.

  • Thank you for the info, Paul.

    I'm also wondering how can my test results keep going back and forth between RA & lupus? So far I was first + on Rheumatoid factor then - but + for lupus? Never had a + for either one & doc diagnosed me a false negative on RA a few years ago. My son,however does have lupus. Doc told me it has been her experience that many of her RA patients eventually test + for lupus. Both I do believe are immunity suppressive illnesses that attack the body. Am I on the right track here?

  • Hi Rayvenjade,

    You are correct that they are both autoimmune illnesses and they can overlap with one another in some cases - occasionally referred to as 'rhupus'.

    Do you know which particular tests you were positive for? Doctors commonly use rheumatoid factor (RF) to help in the diagnosis of rheumatoid arthritis (RA) because approximately 80% of people with RA have higher levels.

    Approximately one-third of people with SLE are positive for RF. Some people who have SLE are found to be positive for RF when their doctor is initially working up their condition while trying to figure out whether they have SLE, RA or some other reason for having joint pain.

  • No, I don't know which specific tests were ran at this time. When all this occurre, we were trying to move & the weather decided to flood us all out. I have since started with a new doc & it's slow going as the norm goes. Once she has the records I'll get & relay that info.

    Greatly appreciate your input & answers!Thank you so much!

  • There are many of us and for me it was devastating at first, but then I decided to shave off the bit left and wear hats and a wig.

    It does mean somewhat of a lonely life at times as I wear the wig in public and go without or a hat at home.

    I like the freedom of nothing and I decided to look at the plus points - no wasting time and money at the hairdressers, just shower stick on the wig and go.

    The main thing is to keep positive and still enjoy life as much as you can. It is the soul that matters not the physical appearance and for those who make remarks, I ignore their ignorance and tell myself I am the better person.

    Coping with the physical symptoms and discomfort of auto immune problems is far more challenging and needs my attention.

    I can't take drugs, for I know they are what caused my original problem - that and trauma through out my life including medical treatment/surgery.

    Steroids are known for causing skin problems and hair loss along with many other drugs.

    I eat as healthy a diet as I can and listen to my body as much as possible.

    Don't let hair loss ruin your life - it is only a vanity thing and we are much more than that.

    Take care and follow your true life pathway.

  • Thanks Cann, Yeah I need to get a good wig that suits me and then I think I will be fine going out in pubic. One thing that is concerning me is the people at work. I was/am in a reasonable sized building and so everyone knows who everyone is even if they don't talk to each other and so atm when I am there I feel everyone noticing the dramatic change in my appearance. So if I now turn up in a wig I am going to feel just as noticeable so I almost don't want to wear a wig around people I know :P

  • That is your choice Emily00. It is whatever you feel most comfortable with. I chose a wig nearest my own colour and style to lessen the change effect. Some noticed and said 'Oh you have cut your hair'. I was always honest and said I have a health problem and my hair doesn't grow, so I wear a wig, (just like people wear glasses if they can't see or a hearing aid if they can't hear).

    It really is nobody else's business but yours and do what you feel most comfortable with - you are not committing a crime or doing anything to hurt someone else, so be confident and be happy!

  • Hey, Emily00! My grandmother has been wearing wigs since she was 23! Imagine!

    Anyways, look look & try on! Many made now days are so much better looking than years ago! Plus you can change color & style all you want without messing up you hair like many women do by over processing their hair. It looks way worse than a wig!

    Though I still have hair I've seriously considered wigs just for the reasons I mentioned (color style). I need a local store however. Hugs!

  • I can't even use shampoo on my hair, so if my hair grew back I would still have it cut and wear a wig because like you say it is better than using chemicals on your hair and most shampoos have something I wouldn't use if I could anyway.

  • I understand that. This where my expense comes in. I decided to highlight my hair to blend my gray rather than cover it. I spend my limited funds on that every 6 mo & I buy organic, sulfate free shampoos & morracan oil for my hair.

    I also buy bare minerals makeup. My skin has always been sensitive to makeup & my dad & gma bought me the bm makeup years ago to try. I didn't breakout or have any skin issues with it plus it's very light & I'm a huge fan of the brand. I love their skin care line but can't afford it so I hunt constantly for the most natural/ organic skin care products for the least amount I can find. Needless to say I read many reviews on products to avoid hype & misrepresentation of them. Consumers usually tell it like it is.

    I do that a lot on just about anything I'm going to spend money on. I'm still hunting a cookware set worth purchasing, lol!

    I have heard that mane & tail shampoo & conditioner for horses is fantastic for people with hair issues of all kinds. This includes menopause phase as our hormones changing effects our hair & skin. The cost is minimal & you get large containers of it.

    I'm seriously considering this as my next purchase since I'm in the middle of menopause. I'll keep ya posted on how it does. The conditioner is supposed to be very hydrating for the skin as well as hair. I wonder if it can help with hair loss too....hmmmmm.....that would be a bonus for many!

  • Yes, let us know how you get on.

    I have so many allergies to even good natural things as well as chemicals.

    I don't know why but wondered if the body connects them in some way.

    I can only use water on my head and body - no soap, conditioner of any kind.

  • Geez! Bless your heart! I be seen people with allergies like that on tv. DicovorynHealth channel. Thats just awful! Hugs!

  • Thanks, Rayvenjade.

    I was so lucky to be taught to muscle test myself with kinesiology by a wonderful kinesiologist.

    It has saved my life and still is keeping me alive along with the universal energies of love!

  • Good docs are hard to come by so I'm glad you found one!

  • Awesome perception! Vanity is such a double edged sword. The bottom line is , I believe, to do what makes you feel comfortable in your own skin. It took me a while to get here from emotional abuse. I've been sick most of my life & too thin or meds causing over the top weight gain, etc.

    I had always hated my looks feeling that it made me a target for bullies & abuse.

    As I get older, I find that I'm more oblivious to others stares & care even less what a stranger thinks. I care only what me or my husband thinks.

    I hate fashion trends & have my own style & im sick of reading how women over 50 should not wear this or not do that, or dress too young, blah blah blah. Maybe the younger girls/women should stop dressing to look older.....

  • I think we are similar in our outlook.

    I have always felt different from others and whereas I used to be ashamed of that, now I am proud of it.

    I am glad I have finally learnt to follow my true pathway and the amazing thing is others now respect me for it.

    However, like you I suffered emotional abuse when I was young and made to feel ugly, but not just emotional but physical abuse, too.

    When you are young you cannot understand why so much or stand up for yourself so well, but now I do if necessary.

    Generally people are kind except the ignorant ones.

    I have my own fashion, too, and that is whatever I feel comfortable in.

    I live and let others get on with what they want to be and do.

    My only concern is positivity in my life and not negativity.

    I get stressed at times like everyone else, but I do my breathing and meditations and ask the universal energies for help to sort the stressful situation. I have had a lot of help that way.

  • I was made to feel bad about my lack of height. I was overly shy as a child often hearing oh what a pretty little girl you are, & so on.

    But you know what? That didn't stop me from being a target for someone else's twisted ways. I still got bullied, molested, abused, etc.

    If I looked good for my ex, I was accused of cheating, so I then downplayed my look only to hear I never fix up for him! Ugh! Damned if I do damned if I didn't!

    Once single, I wasn't looking & fixed up me for me. I love jeans & t-shirts. Though my hair is long, I hate to fuss with it. I will do it for my husband now as he loves it.

    I was always passed over for friends by guys, so I quickly learned how shallow pretty/good looking people really are & decided I'd never be that way. I chose to enhance my brain & I'm often underestimated. Meh, don't care. I will say this, I don't talk much when in a crowd but when I do, it's usually witty & honest. Most find it shocking. In the end I get the best and last laugh.

    True beauty lies within & reflects outward. This to me is how People should be viewed. The outward package can be very deceptive.

    I don't have a problem with beautiful looking people, but that doesn't mean I want to know them or hang out with them. I learned in school how cruel they truly are. Being a loner & wallflower has served me well.

  • Good to read your story, Rayvenjade.

    We must remember to keep smiling, too.

    That way the world smiles with us even if we are loners because do you know that we are never alone - the angels are always around us to call on if we need them which I have done many times in my life and will continue to do so. They never let us down!

  • True that & I need to remember that & learn to call on them. I do smile despite the hard times in life. I prefer to bring others up even when I'm down. Helps to feed the soul.

    You, my friend, are a breath of fresh air! Thank you, Cann!

  • Imuran causes hair loss too

  • I HAVE BALD PATCHES & NOT ON MEDICATION. DOES YOUR SCALP ITCH LIKE ANTS CRAWLING UNDER THE SKIN BECAUSE THAT IS WHEN I KNOW THE HAIR IS FALLING OUT. I REALLY HOPE YOUR HAIR STOPS FALLING OUT. GOOD LUCK

  • Hi gery, yea intitially I had itching where lesions formed fromt the discoid lupus but that has settled down now. Its hard because there are so many possible causes of the hair loss - is it lupus? in which case you need more meds, or is it the meds in which case you need less!

  • HI EMILYOO. THANK YOU FOR REPLY. YES IT IS LUPUS HAVE HAD IT MANY YEARS BUT IT FLARED ABOUT 4 YEARS AGO WITH MY SCALP WORST AFFECTED. NOT TAKING ANY MEDS AT THE MOMENT. I WILL ASK MY GP FOR HELP.

  • Sounds like there's no happy medium for this illness. I'm so sorry for you! Hang in there, sweetie! Hugs!

  • I have been on Plaqueinil for 2 years and am using Keranique, This has made a world of difference.

  • Hi Emily,

    I too started having clumps of hair falling out.Long story short,after a biopsy from a dermatologist....stress was ruled out, medications were ruled out and it was found to be related to a connective tissue disorder. I am already on quite a bit of immune suppressants so my dr does not want to add more to the mix at this point. I am taking omega 3's,collagen and using Nioxin shampoo to try to slow the loss.

    Ask for a referral to a dermatologist he may have answers specific to you?

    Wishing you the best of luck☘

    Gen

  • HI, I'm not on the same kind of medications you are . But I have been having my hair fall out by the hand fulls for the last 4-5 months too. I can't figure out what is causing it either. I wash my hair once a week an I'm using a special shampoo that is suppose to strengthen it. My endrocrinologist told me to get some biotin vitamin it is suppose to help women who have hair falling out more than normal. I'm going to get some they also have shampoo with the biotin in it too. I've tried mane an tail shampoo an conditioner an mayo on my hair but no luck so far, last Sunday when I washed my hair i had more fall out than usual it was a big ball of hair about the size of a ping pong ball.

  • Thanks SassyZee, I have just bought some biotin so hopefully that helps a bit. I don't wash my hair anymore at all - I used to wash it everyday!

  • πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£

    Hi Emily;

    I have been taking plaquenil, prednisone, & methotrexate for about 3 to 4 years. The hair on my head has thinned some but, my hair loss has been on my body. I have absolutely no body hair from the neck down. I understand about being Self-conscious. I am a guy so having no hair on my body is odd. I have no underarm hair, I have no hair on my legs, and yes, I have no hair on my private areas.

    I don't mean my body hair is thin, it is completely gone. Not even one hair can be found now.

    I have Lupus (SLE) so between that and medication my doctors tell me it is common?

    Wish for you the best!

    πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£

You may also like...