I was just wondering if anyone has experience the nature of their hair changing? I know it can get thin and it falls out when taking prednisone but I’m sure I’ve read somewhere that hair that was straight can go curly. I’ve had straight hair all my life and yearned for a head of curls, that’s natural curls ( ignoring the perms I had over the years) and in recent months I have found a kink here and there but in the last few weeks it’s got more curly especially underneath. I haven’t got the curly hair that I would like more of a bad perm where bits have been missed but it’s definitely changing. I’ve been on pred for nearly two years never more than 15mg and now on 7mg. If it is the steroids I wonder why it has this effect?
Hair changes with PMR.: I was just wondering if... - PMRGCAuk
Hair changes with PMR.
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Suffolklady
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My hair had a slight wave, but 3.5 years on preds and it is really curly, I was on 40mgs originally and did lose a lot of hair. And strangely enough, its not as grey as it was, which is very strange - so don't give up on the curls yet 
I shall keep my fingers crossed. Thanks for letting me know. Thought it was just me.
I, too , have wondered why hair would change from straight to curly and vice versa. hair gets its shape from the follicles, so the follicles must be changing when this happens. As hair can change from childhood straight to curly or even frizzy at puberty perhaps it has something to do with hormones, and the effect of pred on our hormones?
It’s a weird one. It has to be the steroids but I can’t see the connection with the change of hair. I’m hoping it will keep changing, conditions good on my hair and I colour it. Suppose every cloud and all that.
I know a friend of mine with straight hair now has curly hair after chemo, perhaps it is a similar reason.
Yes heard that before, maybe.
My hair went curly but also very dry and took on the look of a haystack. I got it cut very short eventually so it looks quite funky now and a lot easier to look after.
OH MY GOODNESS! I am having the same issue... I have really short, STRAIGHT hair and I have noticed (after 9 months on Pred) that on the nape of my neck, I have a CURL! One small section of hair, that will not lay flat, it just curls!
Also, the hair on the right side of my temple has a section that bends and sticks out to the side! No matter what I do, or what product I put on it to make it lay flat, it just sticks out!
: O
Suffolklady• in reply to
You’re on the way mamic1, you will be looking every day now lol. Mine started with a few kinks at the nape. I washed and left it to dry and when I looked I had a mass of curls at the back, unfortunately the top that lays over is straight (I have a bob style) perhaps if I get it layered it might blend in.
That's just what I had to do. I miss my bob it was part of being me.
• in reply toSuffolklady
OHHHHHH NOOOOOO!
Suet3942• in reply to
That’s called a cows lick in the uk. I’ve always had one.
My hair went BONKERS for the first 2 years. Always been straight ish, shiny...became kinky and like a haystack! I hated it. But now...hurray! It has come back to my normal since I have been on 7 mg and less. Light in the middle of the tunnel?
• in reply toMary63
HURRAY!!!!!
I have no idea why it happens but it does. Get a clever layer cut and you might have the hair you’ve always wanted.
Yessss...... that’s a great idea. A change is good and at least I can focus on a positive issue for a change.
Hi Suffolk lady my hair suffered dreadfully and I felt like the doc in back to the future hair only I'm a woman, really is horrid I've decided now to have a hair piece(costly) but it really is so depressing nothing I do will stop it going crazy in texture falling out and impossible to style I'm done to 10m just recently hair piece is not ready yet either as takes 6-8 weeks to make I can't wait! But I've noticed my hair is not falling out like it was I presume that is the tapering down if the predisinone, hope this helps!
Hi Jamie345. Ah that’s a shame you are going through that I can imagine how distressing it is to lose your hair. I lost a bit when I reduced from 15mg to 10 it came out at the roots and my thick hair became quite thin. Then when I got to 8-7 it stopped and new growth came. I hope you are pleased with your hair piece it will make you feel better I’m sure. Thank you for your reply good luck.
I must say....the only wonderful effect of prednisone for my PMR is that I have great hair. In the early years on pred I lost a lot of hair and it remained straight with no body - and I kept it cut quite short so the hair products could work better to give me some “lift”.
However in my 5th year my hair got pretty wavy and I’ve grown it out to shoulder length. It requires no maintenance, I just shampoo about once a week and just run my fingers through it in the mornings. It’s pretty great! I have no idea what will happen when I eventually get off the prednisone!
Yes I wondered if you come off of pred if your hair goes back to what it was or maintains the new curly effect
I've only been on pred for 3 months down from 20mg to 10, but notice the hair on the back of my head seems thinner I have to do a 'comb over' although not noticed hair on pillow or brush. Had it cut really short to try to suit the new hampster look. Definitely going curly especially when caught in the rain. Gaining hair on my chin 'chins' though, it must be a hormone thing, hope my voice doesn't break, I like being a soprano!
After 2years on pred my hair turned into a frizzy mop.I try all types of conditioners etc. I use a hair mask now on wet hair and let it dry and it leaves it curly which is ok.
I'm meeting a friend today and it's very windy out, could be a very bad hair day😂🤣
Hi All My hair started to fall out almost straight away on 20mg of Pred, I was diagnosed in Feb this year. Started to go frizzy at the front which is a right pain. I am now much more gentle with my hair, no frenzied towel drying just let it dry naturally. I use a gentle shampoo like E45 and Argon Oil as a conditioner, but, I still have it coloured. Also I am now taking Folic Acid once a day which is also reputed to help hair growth, and after tapering to 12.5mg it has eased up a bit on the hair loss. My sister a hairdresser says that the hair follicles become damaged as curls are an aberration and that is why chemo also damages your hair. Take care Love Angie xxx
I had a short blonde bob (high lift tint) pre PMR. When I couldn't raise my arms to sort my hair I stopped the high lift tint (no more chemicals) and had it shaved at the back and short all over - kept a bit of a fringe as I don't want to scare anyone (takes two mins to blow dry, always looks tidy - bliss). If it is curling - I can't see it! My hair is a bit thinner and I'm no longer blonde. I am salt and pepper bordering on white. Sounds horrendous but guess what - I don't care!
My hair went thinner on the top, l first noticed when on holiday France as the light was coming at a different angle in the bedroom while l was drying it. At first l blamed the Methotrexate but l checked through some photos & think it was the Pred!
Sadly l got breast cancer & had Chemo, so l lost all my hair, it’s almost three years now, the Oncologist blames the Pred & Methotrexate for slowing down the regrow then. The back & sides are growing OK but not the top however it’s dead straight now but the first Chemo Hair came through like frizzy wire wool but now it’s straight except at the nape where it’s a bit curly & likes to do its own thing!
One thing can be said for wearing a wig is, you never get that just cut look or the wild/bad hair day!
I’ve spent £100’s on Hair Products & Supplements, to be honest l think they have helped to some degree.
I remember how awful l felt when l first started noticing it was going thinner as my face was getting fatter on Pred.
I’m not optimistic that l’ll ever have the same kind of hair again but l love my wig(s) & it’s so much quicker in a morning 💁🏻♀️
I too, after a lifetime of unrelentingly straight hair, now have very natural looking waves. It looks quite good actually, but I'd gladly trade it for being GCA/PMR-free.
Its the steroids. I've always had hair with a mind of its own - but I could get it nice - but the steroids have played havoc with it. Totally mad now! Just another nice side effect of pred!!!
My hair kept falling out, and keeps falling out even though I have been off prednisone for two months. It always looked like fuzz. ☹️ My clothes are always covered with hair. For two years every time I empty the vacuum cleaner it is full of my hair. I'm taking folic acid I'm hoping it stops. Does it get better?
Mine slowed down the badly shedding effect after I had that initial reduction of pred. I still lose the odd few hairs when I brush it but it’s growing back now on the top of my head in the sunlight I can see the little fluff sticking up. I use Alpecin shampoo I think that has helped a lot and it’s in good condition too
Good Morning
Yep the same with me. Wonderfully,much loved straight thick hair is now kinky and thinning. Mine is on the ends and underneath at the nape. I don't like it. I really don't
like it at all. This is not something I thought I would EVER have to go thru.
Bummer
If this was the worst of it I would be a happy camper.
Alas it is not, so I bear with it and move on.
Have a Wonderful God Given day
Lin
My hair hadn't thinned but has gotten very dry. And I also have a few strange waves which my hairdresser had commented on. I already have short hair so just quit washing it as much and use more conditioner . Now at 5
Hi Suffolklady, My hair too changed from a straight bob to a (not curly) frizzy mess. Scarecrow stuff. Have to wear a wig to look acceptable. I am sure that it is caused by the Prednisolon. Just hope that it will go back to normal when I can stop the Pred. I have after 2.5 years problems reducing my meds. Still on 11mg.
I realise this is not much of a cosolation, but it also means that you are not on your own. Wishing you all the best.
Toenti
Hi Toenti. I feel for you if you are not happy with your hair. I know it’s a side line to what we go through all the pain and fatigue but it all goes towards the general well being which is important with staying positive. I know I’m chuffed with the waves I have but I’m lucky that I still have a good head of hair but for those of you who are not so lucky it’s a real bummer.
It’s not easy to reduce and I can see this being a long journey and there is still mileage for me I’m afraid. Good luck to you.
Hi Suffolklady.
Yep! I too have the haystack/scarecrow look. I’ve had a tendency to this for years when it’s humid or wet weather, but now it’s pretty much all the time unless the hairdresser works her magic on it. She says the pred cooks it from the inside out. I’ve been on Pred since November and tapering 9.5 to 9, so hoping if I can continue to slowly reduce it improves. Only wash it when I have to (about once a week or going out) and only use natural products and loads of conditioner.
Just another thing to live with while on the PMR journey - sigh!
Yes the list is endless Nerak12 but we plod along on the journey. Most hairdressers are mystified with the change as much as we are but if they can work the magic then I can live with that.
Hello there. Been on prednisone for one year 8 months. Now on 2 mgs. I too had perfectly straight hair and now it is kinky and looks like I have crimped my hair- but only the layers underneath! The top layer is straight. Ugh!
Spot on that’s what mines like so I’m going to get some layers into it when I next have it cut. Underneath is really curly on top dead straight. I’m hoping that might change.
Yes. My hair began to fall out four months ago. I was very upset. Now it seems to
Have stopped I have it trimmed as it is wispy on the ends. My hair is curly anyway but it has got rather wiry. I
Put lots of conditioner on it then leave on spray in conditioner after. I’m dealing with it a lot better and have accepted it. But believe me it takes time but it does
Happen. Good luck
Same happened to me!!!
I always had thin and pretty much straight hair. Now it's quite wavy in the back, underneath. Plus my hair is quite dry. Not pretty 
I always wear it up now.
Forgot to mention....I also have lost a good deal of hair which has been traumatic since my hair was fine to begin with.
I did at first but it’s starting to grow again and get thicker. Hopefully yours will do too. 😉
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