1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Prednisone and hair thinning

Posted , 6 users are following.

MrsMAC-_UK
MrsMAC-_UK

This is my third year of having PMR, at the beginning of this year I suffered a bad relapse, for which my GP increased my daily prescription of Prednisone to 30mg. Now 10 months later, after carefully and slowly tapering the dose I am now on 7mg, but, during at least the past 4 or 5 months I have notice my hair thinning all over.

I have fine hair anyway, and so I am naturally worried, I wonder if anyone else has experienced this, or if any one has any comments please, I would be most grateful.

0 likes, 12 replies

12 Replies

  • constance.de
    constance.de MrsMAC-_UK

    Posted

    I have also had PMR for over 3 years.  I also have thinning hair, had fine hair, too.

    Hairdresser noticed it first as it is only at the back.  It hasn't been too bad recently, thinning slowed down, so don't despair.  However, at 75 I suppose my hair would be thinning anyway!  Good luck!

  • EileenH
    EileenH MrsMAC-_UK

    Posted

    I found I shed hair dreadfully not just with pred though - it had happened earlier with the PMR pre-pred too. I have very thick hair so it didn't really bother me too much (sorry, I know that wasn't really helpful to you), at least at first. But when I was switched from prednisolone to methyl prednisolone it didn't just fall out, it stopped growing and became terribly frizzy - and that desperately upset me. I switched meds again almost exactly 2 years ago - and my hair is now back to normal after a very interesting curly period like when I was in my 20s! I've left it to grow as I'd like to get it back to the bob it was before I became ill - just hope the hairdresser can do it as I'm far from impressed with their skills here! The only thing I miss from the UK, my wonderful hairdresser although my current one isn't bad.

    The hair falling now probably reflects you being ill a few months earlier - that was certainly when I noticed mine at its worst a couple of years ago, a few months after I spent 3 weeks in hospital and had also had a massive flare. 

    I can't offer much in the way of suggestion - but I read a blog from a young woman called Sara Gorman called Despite Lupus. Not PMR I know, but also autoimmune, treatred with pred amongst other things - and one of her problems is hair loss so she has often written about it. Maybe you could find some suggestions and comforting ideas there? 

    I think yours should start to improve and thicken again as the new growth comes through - that was certainly what I noticed, sort of fluffy shorter bits growing through the longer stuff and the hairdresser also commented on how much new hair there was. 

    • heather39822
      heather39822 EileenH

      Posted

      Distressing that the stuff thins on your head and flourishes elsewhere! Can't control my whiskers and fear mutton chops will soon meet up with bristling chin and moustache! For those of you down to low Pred doses, does this whiskery cultivation slow down - or even, dare I hope, stop? 
    • EileenH
      EileenH heather39822

      Posted

      See that didn't necessarily happen either - haven't shaved my pits or legs for AGES but it is beginning to grow back. And had to use the epilator for the beard...

      But yes - as the dose falls it does normalise. My chin bristles are far less enthusiastic now and the fine dark beard is long gone and what is left is getting finer and finer.

  • elaine_19679
    elaine_19679 MrsMAC-_UK

    Posted

    Hi Mrs MAC, I've been on predict now for 13 months and have noticed my hair is thinning out. I've always had a good head of hair and it's upsetting when this happens .my hair has also gone frizzy when it was straight and shiny before.

     

  • elaine_19679
    elaine_19679 MrsMAC-_UK

    Posted

    sorry I'm not sure what happened, couldn'tfinish my post as it wouldn't allow me to write any more. Anyway I was going to ask if there was anything we could do about it.

    today I finally saw my consultant about the reflux problem I have after months of waiting and various tests I found out that it's back. 

    seven years ago the same consultant did a fundoplication and hiatus hernia repair which was successful and after a few months of pred it's back. I need surgery again as the hernia is back and I have esophagitis and some patches where the acid is burning it.

    because of the pred he is trying to avoid surgery as he said it probably not be successful so is now treating me otherwise and watching me.

    He is one of the top specialists in the country so I just have to follow his  advice.

    hopefully this pain will subside and I will finally stop clearing my throat and coughing.

    sorry everyone, needed a good moan. 

     

    • EileenH
      EileenH elaine_19679

      Posted

      You weren't given alendronic acid were you? Or have we discussed this before?
  • elaine_19679
    elaine_19679 MrsMAC-_UK

    Posted

    I was asked to take it by rheumy but never did thank god. I'm now still on 10mg of pred. Have been for two months because of the tests they were doing so wasn't able to take medication for the reflux . Have however been well on the pmr front but reducing means using uncoated tablets and I'm worried it will make things worse again as before.
    • EileenH
      EileenH elaine_19679

      Posted

      Follow this link:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      and in the 4th and 5th posts of the thread you will find my reduction scheme "Reducing pred: dead slow and nearly stop"

      I use 1mg drops at a time because the coated pred I use have 1mg tablets as well but I know someone else who tried this using 2.5mg drops since they needed to use enteric coated pred like you. It should work if you go slowly enough and it spread the drop allowing your body to get used to the idea of the much lower dose over weeks not a few days.

      Since using ordinary pred causes so many problems for you I wonder if your doctors - at the urging of your gastro chap maybe - would consider letting you use Lodotra, theoretically it is available for RA in the UK but hasn't been evaluated by NICE for PMR - it is approved in Germany and the USA though so it isn't an unknown concept! I've used it for 2 years and am very happy on it. I get it on our healthcare system here in Italy but I know 2 or 3 people who pay for it privately in the UK.

      It is a coated prednisone tablet which breaks down and releases the pred after 4 hours, so well past the stomach. You take it at 10pm so it releases at 2am and is at its peak at 4am - just before the cytokines that are responsible for the morning stiffness are releases so the inflammation never gets started. It comes in 5mg, 2mg and 1mg tablets to allow for reductions.

      It is, of course, more expensive but it would probably avoid your reflux problems whilst allowing you to reduce 1mg at a time. Of course, the Bristol group would keep you at 10mg for a year so maybe it is doing you a favour since they find that reduces the rate of flares from 3 in 5 to 1 in 5!

  • Oregonjohn-UK
    Oregonjohn-UK MrsMAC-_UK

    Posted

    Slight aside - both my legs have no hair at all!!  My wife is quite jelous, there is a downside in that it seems to be growing quicker and thicker on my ears - just cant win.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.