Hair Loss

Hello everybody hope everyone is having a nice day, i'm a little concerned about my hair and wondered if anyone had any advice to give me, been on methedoxate for over 2 weeks (take my 3rd lot friday evening) i have also got throid problems and as a result my hair is reletivley thin anyway which isnt great, however over the last few days i have noticed that around my hairline i have what looks as though strands of my hair have come out and left me with what looks like half strands of hair and the start of a frindge (i have only noticed this as i have clipped my long frindge up today), maybe this is normal? maybe i need to see what happens? any advice would be great, thankyou.

21 Replies

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  • Louinna, speak to your rheumy nurse and see what they say,ask your gp, inhaven't encountered that problem, but all i will say is seek advice from a proffesional. Sorry i can't be of more help.

    Sylvi.

  • Hi Louinna, hair damage and loss is a common side effect of DMARD's.

    My hair is quite thin and soon after starting MTX (many yrs ago) I noticed what appeared to me was massive amounts of hairloss after washing. I got my hair cut relatively short and into a style that gives body, I also use a hair thickening moose and heat protector when drying.

    If it's really bothering you have a chat with an experienced hair dresser I'm sure they'll be able to offer some sound advice and best style for you so it's not so noticeable..

    Cheers

    Beth xx

  • Thankyou very much for your help ladies, i have just rang my nurse and left a messege on the answer machine for her and have an appointment next week with the hairdressers hopefully they will both put my mind at rest, i worry constantly about things and especially this, the confussing thing is i havent noticed any hair falling out as i look on my pillow in a morning and check my hair brush quite a lot (probably 2 much really) the hair at the front of my hair line seems to be more damaged than actual loss or at least at this stage it seems to be.

  • Hey Louinna this is exactly my worry too as every one on this site will probably confirm - I was banging on about it long before I was actually put on MTX! I have had alopecia 3 times in my life - twice gone completely bald as a child and so am totally paranoid about this particular side-effect even though my hair has been really thick and good over recent years i know that it can happen to me because it has.

    I have heard that the folic acid we are given can be upped to counteract this and other side effects? When I'm sure that my hair is definitely thinning or falling out i will ask my GP (I don't have a rheumy nurse or secretary) or the head physio who seems to be in email contact with my rheumy. I have tried to warn them all (rheumy, GP and head physio) that if I start balding I will ask to come off the MTX but whether I will have the guts to carry that out i don't know because to them it may sound pretty trivial compared to the damage RA can do to our joints?

    Like you I get up every morning and look at the pillow which seems to be covered in my hair but my OH says that my hair (blond) is always everywhere anyway. I also look at the brush each morning and fret and I do feel it seems dryer and coarser to the touch but this is probably just me looking out for it too much.

    Anyway I'm not being much comfort to you am I - but at least am in the same boat as you. And I definitely have nodules on my hands since starting the MTX and that's not very beautiful either but they will probably tell me it's just the RA at work! Not so bothered about my hands as RA is effectively trashing them anyway!

    Here's to lovely hair staying put. Tilda xx

  • Tilda, your messege was lovley, here was me thinking i was going mad as i check the pillow and hair brush so many times am so glad its not just me that does that, your messege cheered me up lots and lots, and my OH says my hair is the same as it was although he has told me i have always had a small bald patch on the crown of my head (through thyroid and thin hair) i think i'm extremley paranid about it all to be honest. Thankyou once again xx

  • Hi Louinna,

    I too am on Mtx & while I am lucky to have thick hair I too noticed this new 'baby hair fringe a couple of years ago, very fair and wispy. My hair has thinned & I think receded a bit, but seem to still have plenty, at the moment hope it does'nt get worse.

    I feel crap enough at the moment.

    REgards, Gina.

  • Thats just what its like a new baby fringe i really will be keeping an eye on it, really want MTX to work for me but doubt i will be able to stay on it if my hair goes. Hope your okay Gina xx

  • Hi all

    I had same fear, but it hasn't come to anything after well over a year on MTX. I was sure that I was losing hair at the start - and my obsession was looking at the plughole in the shower. Like others my OH said it was the same, and now it does seems to have either calmed down or there wasn't a problem in the first place. Others have said that it was temporary while body adjusted to MTX - but that's not much help as nobody wants it even starting. It's seems incredibly mean that this disease attacks more women than men, and has side effects that are often v sensitive for women like thin hair & ugly flat shoes. Sorry to stereotype, and maybe some of the men will tell me that they too hate these effects and not being able to get to the gym or open jars is their bugbear? P

  • I think the men worry about loosing hair with methotrexate too x

  • I think a lot of men worry too - but there isn't such a stigma attached to hair loss when it happens to them as there is for women. I know there was a heated debate on here quite recently about this but i stand by the fact that for me having a big bald patch in my mid thirties was terribly humiliating in a way that my male friends who are bald did not experience. And with all the other stuff that RA brings our self esteem is fragile enough.

    A GP told me that she finds it really heartbreaking when cancer patients lose their hair during chimo - and of course they are on far higher quantities of this stuff than we are - but the difference is that theirs will usually grow back when the course of chimo ends whereas we have this condition and the drugs for life - not to mention facing extreme ignorance of society about our condition. I mean if you told people you were losing your hair, limping, in splints, unable to write, exhausted etc because you had cancer most people would immediately know that this was cataclysmic for you. But if you say " My hair is falling out because I have RA" it doesn't make many people go "oh I'm so sorry poor, poor you" does it? Or maybe I just know the wrong people! TTx

  • Yr comment re knowing the wrong people reminds me that when I was in state of terror about my hair I was moaning to an aunt. She responded with complete incomprehension/disinterest.... I'd forgotten that side of the family are largely orthodox so wearing a wig is second nature. No sympathy there then. P

  • Oh now that's a thought Polly - a strand of my dad's family are orthadox - maybe I shall become an orthadox woman and don a wig and have my late father spinning in his grave? But on the other hand wigs always sound horribly hot and itchy to me think I'd prefer to dump the MTX seeing as there are other DMARDs that don't involve hairloss as a side effect! TTx

  • If they try to put you on Arava its really bad on your hair. I was also on it and I stopped it,I have thin hair now and its very noticeable if it starts to fall out:(

    Good luck!

  • Hi

    I have been on mtx for 8 wks and I experienced hair loss in particular after the 1st or 2nd wk. It was horrendous the amount of hair I lost. I have thick hair and now its fine. It settled down by wk 5, and once again I got hair loss, but less this time when they uped the dose to 15mg from starting at 10mg.

    I dealt with it by cutting my hair to a shorter hair style. It has grown since then, but still remains fine. i.e I have less volume. For me mtx has started to work, so I don't have the constant background pain anymore - hooray, but I have the sickness etc (see blog).

    I am relunctant to increase doseage further due to the hair loss and accompaning sickness. I see rheumy next wk, so will discuss with them.

    My hope is that the hair eventually regrows in time especially if I remain on the same doseage for a while.

    Good luck and you do cope with it, even if you don't like it!

    Sci x

  • I'm ever so scared and ever so paranoid about it (as i think i have said in my previous posts on here) and have coloured my hair for vertually my whole life and now i'm even worrying about that will it make it worse?

  • The more you stress and worry about it the more likely it is to fall out from the stress and worry! What colour is your hair naturally and would you feel better if you just let it go to natural perhaps?

    I've stopped stressing about my hair so much because it's all in the lap of the Gods and I can't get to see a GP just now as mine is away until after Xmas so it would be a terrible time to come off it unless I have to. Going to wait until the New Year and see whether it starts to work in killing the pain because it certainly isn't doing much just now! Good luck and just try not to worry so much. If you look at NRAS videos of charity events many people have RA and all seem to have fine heads of natural looking hair (as opposed to wigs or headscarves) - same with most of the pictures people put up of themselves on here! Hope that cheers you up a little? TTx

  • Hi all

    Thought some of you might find this information helpful and possibly reassuring. This is the information in the NHS patient safety information on oral methotrexate (MTX) on hair loss:

    Thinning of the hair

    This can happen, although it is uncommon and, if it does

    happen it is usually slight. Hair growth usually returns to

    normal on stopping treatment. If you feel this becomes

    more than a very slight hair loss you should discuss it with

    your doctor.

    For those of you due to start or recently having started MTX hopefully this offers some reassurance that hair loss is normally slight. For those established on MTX that have had this side-effect, hopefully it has been slight, but if it becomes of greater concern it should return to normal on stopping treatment.

    Kind regards

    Victoria

    NRAS Helpline & Information Coordinator

  • Hi- I had hair loss at the start, so my folic acid was upped from once a week to four times per week, this made a real difference. I know try to use organic shampoo (called Organics)x

  • Hello ciyoung,

    Can you please tell me how much Folic acid you were taking and how much it was upped by?

  • I also have had thin/fine hair all my life and I was on methtrexate and my hair was just falling out..I had to stop it because it was hurting my lungs....I did read where RA does have a effect on the hair thinning?i dont know what to tell you cause I am in the same boat???Concerned..:(

  • Hi Louinna,When I started on MTX I had hair loss so my rheumy nurse told me to increase my dose of Folic Acid.I take MTX on a Saturday and then one Folic Acid on Mon. Tues. Wed. and Thurs. The hair loss has stopped,in fact it seems to be growing quicker than it did before I started on the meds!

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