Help...hair falling out!!!

jobear
jobear Bots Posts: 10
edited 1. Jun 2009, 17:21 in Living with Arthritis archive
Hi all,

I posted quite a while back about having problems with my hair as a result of taking MXT injections. Well, since then its getting really bad, clumps fall out when i wash it and when i had it cut at the weekend even the hairdresser commented on how its was really thinning on the top. Im devastated as ive always has lovely thick naturally curly hair and the envy of all my friends. Ive had it cut short in a bob but even from a distance you can see bald patches. Just wondered if anyone else has suffered badly and what they did if anything?

Thanks in advance for your help.....this is a greast forum and im an avid reader!!

x

Comments

  • anniethe1st
    anniethe1st Member Posts: 8
    edited 30. Nov -1, 00:00
    HI ,hair loss through what ever reason is very upsetting,my daughter has had alpecia since being ten years old,she had lovely long thick hair now none only spiky bits that come through white,she has now some realy nice wigs maybe this is an option for yourself for a special occassion ect there are some nice ones on a tv channel where you could buy and try if you dident like it then you have the option of sending it back,allso ive seen some stuff on tv you sprinkle on your thinning patches and it makes your hair look thick again,l hope thease suggestions help.
    Ann
  • slummymummy
    slummymummy Member Posts: 69
    edited 30. Nov -1, 00:00
    Hi, I'm on methotrexate and was worried about this too. I read a thread on here that said that if you increase your folic acid, this can help reduce hair loss. Have a look at the 'folic acid' thread. Good luck
  • jobear
    jobear Bots Posts: 10
    edited 30. Nov -1, 00:00
    Hi again, ive tried looking for the folic acid thread but cant find it....not hard i must admit as im useless on the pc! Any help???

    Also, i was wondering if anyone who suffered with hair loss noticed that it began to grow back again if they came off the drug?? I only say this as MXT is having no effect whatsoever and im hopefully going to be starting Enbrel soon...fingers crossed. The way i feel at the moment about my poor curls is to not bother with the MXT!!!!

    Any thoughts???

    x
  • madwestie
    madwestie Member Posts: 383
    edited 30. Nov -1, 00:00
    Jobear, I also had some hair loss with MTX i spoke to the rheumatology practitioner and she told me to up the Folic Acid i now take 3 a week and even though the MTX has now been upped to 20mg a week i have found that the hair loss has returned to normal. My hair loss was only for a few weeks and didn't really notice but it didn't want it to get too bad.
    I have been on increasing doses of MTX since April with Plaqunil since dec and a few steroid injections and i have just started to feel the benifit of it all. I did wonder at times if it was all worth it but at the moment i would say yes it was. (i would keep my fingers crossed if i could cross them :D )

    Do you have a telephone number on your MTX card to ring incase of problems that was who i rang about my problems. I hope you get it sorted out soon.
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    Hi,

    I have finally plucked up the courage to go and get my hair done today. i have been really ashamed of the state it has got into, but was also embarrassed by the amount falling out! :oops: :oops: and I have lost ever so much of the thickness.

    I know that some of it is due to the increase in MTX from a few months ago, but even before then, my hair seemed to stop growing for quite a while. (This may have been through worry about my hubby though, who knows!)

    So .... my hair is now about 8 inches shorter :shock: (it still comes down past my shoulders :wink: ) and i have braved having a fringe cut in too. :)

    I feel like a different woman! :) ...... just got to see now whether my hubby does when I get home :lol::lol::lol::lol::wink:

    Going to ask GP if there is anything else I can do about the hair falling out - otherwise i'll raise it with my rheumy in November.
  • suzster
    suzster Member Posts: 1,328
    edited 30. Nov -1, 00:00
    hi, i have the same problem but when i spoke to my ra nurse she blamed on just having a baby, even though my daughter was 18 months at the time, so didn't believe it, after all it didn't happen after i had my other daughter.
    anyway i really struggle to wash my hair but when i do alot falls out and i really worry about it and was going to bring it up with ra nurse again when i see her. but i feel better knowing i'm not alone, i thought it was just me so thanks for starting this thread and thank you to all who have said they have the same problem, sorry that sounds wrong :oops: , i just mean that knowing others have the problem will encourage me to speak to nurse again.
    :lol:
  • jobear
    jobear Bots Posts: 10
    edited 30. Nov -1, 00:00
    suzster wrote:
    hi, i have the same problem but when i spoke to my ra nurse she blamed on just having a baby, even though my daughter was 18 months at the time, so didn't believe it, after all it didn't happen after i had my other daughter.
    anyway i really struggle to wash my hair but when i do alot falls out and i really worry about it and was going to bring it up with ra nurse again when i see her. but i feel better knowing i'm not alone, i thought it was just me so thanks for starting this thread and thank you to all who have said they have the same problem, sorry that sounds wrong :oops: , i just mean that knowing others have the problem will encourage me to speak to nurse again.
    :lol:


    Hi everyone,

    Thought Id update you all on the saga of my falling out hair. Have now increased my folic acid to 4 times a week instead of the once a week. So far havent seen any improvement, i guess it will take a while????
    Have been told that if the hair loss still continues to the extreme it has been they will consider takng me off MXT.

    Yet again a waiting game.

    Thanks agaiin for reading, take care
    x
  • kezzo1
    kezzo1 Member Posts: 171
    edited 30. Nov -1, 00:00
    i took folic acid when i was on mtx tablets do i still need to on mtx injects nurse didnt say? :P
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    I certainly take folic acid with my MTX injections.

    do ask your doctor - as you don't want to be without it if you need it!
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Thread bumped up for daisychain. Hope this may help.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • dean76
    dean76 Member Posts: 112
    edited 30. Nov -1, 00:00
    When this happened to me I put all hair that day from bed sheets, plug hole in bath, hair brush odd ones from clothes and put them in a reasealable sandwich bag. When I went to the GP I showed him the bag he said this was a great idea as one patients idea of losing lots of hair can vary drastically from anothers.

    Seeing how much had been lost (although my hair was long anyways so looked worse than it was). My medication was altered pronto and from then on taken more seriously when this side-effect popped up.

    Eventually I was sent to a Trichologis who said I had 'female herditary hairloss' thanks to my dad who was as bald as a coot by the age of 25. But I never lost hair again so I still blame the medication.

    Dean76 xxxx
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    argh!!! I just replied to this thread on the other thread!

    See the hairloss with MTX thread for my update!!

    There is life again for hair on MTX - honest!
  • joyous
    joyous Member Posts: 179
    edited 30. Nov -1, 00:00
    hi all i only take one folic acid 3 days after my methetrexate inj and i have loads of hair all over legs pitts the lot should i increase the folic acid i will need to get my perscripition upped again i just got told folic acid was to stop mtx collecting in r bodies im not due a blood test yet another month yet x
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    I would check with your GP & consultant / rheumy nurse about the folic acid.

    People on here take it at different times and in different amounts - seems to depend on your consultant, your GP and where you are in the country!

    sorry not to be more hlp!
  • joyous
    joyous Member Posts: 179
    edited 30. Nov -1, 00:00
    Wonkylegs wrote:
    I would check with your GP & consultant / rheumy nurse about the folic acid.

    People on here take it at different times and in different amounts - seems to depend on your consultant, your GP and where you are in the country!

    sorry not to be more hlp!
    hi thanks i will ask next time im there in july cheers joy xxx im in stockport i go to stepping hill hos xx
  • tamnwill
    tamnwill Member Posts: 93
    edited 30. Nov -1, 00:00
    Hi there, I was the same as Kaybee, had to take 5mgs every day except the day i took the MTX.............surely your treatment is the same? I too read the side effects are worsened if the high dose of folic acid isn't taken............go back and hassle your gp?rhumy and consultant as to why you're not taking it 6 days a week hon. xxx

    jobear wrote:
    Hi all,

    I posted quite a while back about having problems with my hair as a result of taking MXT injections. Well, since then its getting really bad, clumps fall out when i wash it and when i had it cut at the weekend even the hairdresser commented on how its was really thinning on the top. Im devastated as ive always has lovely thick naturally curly hair and the envy of all my friends. Ive had it cut short in a bob but even from a distance you can see bald patches. Just wondered if anyone else has suffered badly and what they did if anything?

    Thanks in advance for your help.....this is a greast forum and im an avid reader!!

    x
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