Pred hair!!: Anyone have problems with "pred hair... - PMRGCAuk

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Pred hair!!

Primarose profile image
78 Replies

Anyone have problems with "pred hair" as I call it, or it is just me being freaky.

I have lost a lot of hair but also had new regrowth on top which is of a different consistency i.e bog brush.

When I wake up in the morning I look like one of the Jedward twins.

Nothing I do about it but it doesn't look too good.

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Primarose profile image
Primarose
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78 Replies
Ruadh profile image
Ruadh

I have the same problem with Warfarin. Hair like a bush of scrambled dried up grass ! Plus breaking, falling out. Am now using coconut oil to try and put some condition back in. Industrial, pharmacy conditioners do nowt of any worth. In fact, help it to deteriorate even more ! Hoping the coconut oil works some.

Primarose profile image
Primarose in reply to Ruadh

Hi Ruadh

I can't stand the smell of coconut oil, I used to but since taking the Preds it makes me feel a bit nauseous.

Ruadh profile image
Ruadh in reply to Primarose

Am not that fond of the smell, as for coconut in food - OK in Indian food. Rice cooked in coconut milk is delish, does not smell either. But cakes, sweets etc...yuck ! Will see if works on this dried up mess.

HeronNS profile image
HeronNS in reply to Ruadh

Try olive oil. Let it sink in for a while before washing hair as usual.

karools16 profile image
karools16 in reply to Ruadh

Gosh, I didn't know that Warfarin could do that to hair. I take it. My hair looks like a hedgehog in the morning.Yes, I' ll try the coconut oil.

Ruadh profile image
Ruadh in reply to karools16

Am pleased with the result I have seen. Will continue with the regime. Coconut oil.

ConventCassie profile image
ConventCassie

Mine is certainly funny looking after the pool & sauna. Buy a cool hat :) I’ve started an hydrating shampoo & hydrating conditioner. Works so well hardly need the conditioner.

Primarose profile image
Primarose in reply to ConventCassie

Thank you ConventCassie

That sounds good.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Use conditioner and/or non frizz products - John Frieda, Paul Mitchell, Aussie Mate all good brands, or Moroccan Argon Oil and try not to wash too much. Bit difficult in the hot weather, but it strips the hair of natural oils.

Hair cut may help, you need to be good friends with hairdresser during Pred!

Primarose profile image
Primarose in reply to DorsetLady

Hi

My daughter has ordered something organic to help with the frizz, I'll let you know if it helps.

Hindags profile image
Hindags in reply to DorsetLady

I strongly concur: Moroccan Argon Oil and John Frieda's Secret Weapon are life savers. But nothing stood up the the high heat and humidity in Mexico. I let my hair grow a bit just so I could clip it up and hide it under a hat all vacation.

scats profile image
scats

It's given me Einstein's hair when I wanted his brain!

in reply to scats

Hehehehehehehehe

Hollyseden profile image
Hollyseden in reply to scats

Hahaha Einstein's hair and pred head. Not the best combo for us all 🤯

Chrob profile image
Chrob in reply to scats

My Einstein hair has been commented on by a bloke who never noticed anything before .

PMRpro profile image
PMRproAmbassador

Yup - brillo pad hair. It will calm down - mine is back to where it was: thick, smoother on top, shorter nape hair tends to be frizzy though.

Good cut and don't wash it too often.

Primarose profile image
Primarose in reply to PMRpro

Yeh, Brillo pad just about sums it up. I did buy two wigs but it's impossible to wear them in this heat.

tgca profile image
tgca

Yes, lost loads roundabout 20mgs and now, aaages later (7mgs), it has changed texture: wavy, wiry etc and all different lengths. Hairdresser says wait til it's all one length and then she'll have a go!!!

SO many stupid side effect s but hey, I'm living with it... just about!

Took the loose cover off the sofa to wash it and managed to bash my knuckle on my eye bone... you should see the black eye... some people may blame my poor OH

Primarose profile image
Primarose in reply to tgca

Tell me about it, when one of my cats gives me a knead I still come up in bruises, it's not quite so bad now though.

in reply to Primarose

Ouch!

in reply to tgca

Ouch! Bummer! Where a sign saying, "Other half did't do it!" : 0

I was tying a knot in a plastic bag when it snapped and my forearm hit the edge of the a door.... yup, huge black and blue! : (

piglette profile image
piglette

My hair was terrible, like a haystack. I tried every sort of hair conditioner etc. Nothing worked. In the end I had my hair cut really short and it looked quite funky and was a lot easier to manage although it still felt like sandpaper.

Primarose profile image
Primarose in reply to piglette

Hi piglette

I keep thinking about having my hair cut off but not worked up the courage to do so yet.;-) I have also noticed black hair growing, my colour was blonde but now it's gone practically white.

Cinka profile image
Cinka in reply to piglette

'Haystack' just about sums it up, Piglette! ..

When I started Pred my G.P. said 'You may develop a round face and put some weight on..' Little did I know ..

Little did SHE know! .. just what we Predsters have to deal with! She's a great doc, nonetheless ..

Hope we all get our silken tresses back .. I can't bear to look in the mirror at the moment .. 😕 x

piglette profile image
piglette in reply to Cinka

On the plus side pred does reduce your wrinkles, everyone comments on how well you look and you get curly hair along with strong nails. On the down side I know one lady who put on 105 pounds.

Cinka profile image
Cinka in reply to piglette

I didn't know about the strong nails! - I'll have to check!

Your post did make me laugh!

What WILL we do when we're no longer on pred .. ??

.. 'Nite, God bless! x

piglette profile image
piglette in reply to Cinka

The strong nails may be the vitamin D and calcium of course!

Cinka profile image
Cinka in reply to piglette

Of course.. I'm taking vit. d, but not calcium, due to side effects . that could be why I haven't noticed..

piglette profile image
piglette in reply to Cinka

Also my body hair has disappeared (except on my face) so do not need to shave. Great for swimming.

After 8 months on Pred I now these weird "cowlicks" on either side of my head... no matter what I put on them, I can't get the hair to lay flat.

Chrob profile image
Chrob in reply to

Only one cow lick , right side only ,white ,beginning to like it .

HeronNS profile image
HeronNS in reply to

Apparently you have not had to live with "determined" naturally curly hair all your life!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to HeronNS

That gives you a new insight altogether. I longed for straight hair when I was 16 - a la Jean Shrimpton & Twiggy but to no avail.

Now quite happy it’s naturally curly.

How times change!

xdbx profile image
xdbx in reply to DorsetLady

Hahaha yes me too. I used to iron mine. Literally!

I still find straightening it helps but now Im more careful with it and use gentle non-burning tongs.

I also hardly ever wash it which sounds icky but it has found its own balance now and is almost lovely again and falling out much less on 8.5 mg Pred.

When I do wash it I use a shampoo called Mistry which is very pure with no chemicals. On a daily basis I just brush it well with a pure bristle brush to clean it which works a treat.

ClarkB profile image
ClarkB in reply to xdbx

I am on 5mg Pred and I still lose a lot of hair when I wash it. I didn’t have thick hair in the first place. I tried not washing it so often but it just gets knotty and still falls out.

HeronNS profile image
HeronNS in reply to DorsetLady

When I wore my hair long at uni and for a some years afterwards (until middle child decided my hair was his comfort blanket, and he would chew on it ) it was actually heavy enough to pull out the curls so it was just slightly wavy at the ends. It was a bit like Jean Shrimpton's hair I guess. :)

xdbx profile image
xdbx in reply to HeronNS

Oh lucky you! The Shrimp had beautiful hair 😍

HeronNS profile image
HeronNS in reply to xdbx

I was told I looked like her, but it must have been the hair because I definitely never had the beautifully shaped face she has! I wonder what happened to her? It seems she must have gone on to have a quiet ordinary life. And whatever happened to Twiggy, who has a lot to answer for, considering her fame led to a complete change in how teen girls perceive their bodies and all the subsequent problems with that.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

dailytelegraph.com.au/news/...

express.co.uk/life-style/li...

ClarkB profile image
ClarkB in reply to HeronNS

Jean Shrimpton ran/runs a hotel in Cornwall. Twiggy does M&S fashion ads.

HeronNS profile image
HeronNS in reply to ClarkB

Just reading PMRpro's links. I had looked up Shrimpton before, but forgotten exactly what she did now. Her son has taken over the inn. Could never relate to Twiggy. I may have been a plump version of Shrimpton, though. I had a minidress which I split up the front to the waist and then under it wore white shorts, I think they were called hot pants. I can't believe I had that much chutzpah back then....

Mary63 profile image
Mary63

My hair changed from nearly straight to wavy, curly, sticking up, horrible condition, frizzy in humid weather.

But there IS a light at the end of the tunnel. It is just about back to normal since I reached 7 mg. Hurray!!!

Sandradsn profile image
Sandradsn

My hair is frizzy now,someone suggested using conditioner,then shampoo then conditioner again.I think it helps☺

teesher profile image
teesher

One of the Jedward twins? I feel your pain. Why doesn't pred make us look like Marilyn Monroe. Those researchers have a lot to answer for.

Sho-Sho profile image
Sho-Sho

Before I started on 60mg of pred two years ago my hair used to be straight and silky, while on methotrexate for only 4 months lost half of it, all grown back a year later however now look like Basil Brush, dry and fuzzy! But am just so thrilled to have my hair back sort of love it!

How’s about trying Biotin? It’s for nails skin and hair . Might take a bit of time before it works . I bought vegan gel capsules and am taking them because I’m concerned about my hair and skin thinning on the Pred .

Maryis80 profile image
Maryis80

Havent had curls since I was 2 years old (when it went straight when I had whooping cough!) Now lots of hair fallen out but what is left is curly. My hairdresser says she can see and feel the difference in texture but is sure it will recover when I am off Pred. She suggested keeping it shorter than before and it certainly looks good when she blow dries it and it seems to last a week. Am also on Warfarin, so goodness knows what will happen.

piglette profile image
piglette in reply to Maryis80

My hairdresser is really quite rude about the quality of my hair and goes yuk! I have known her for many years.

Lanza23 profile image
Lanza23

I too have lost alot on an already thin head of hair. My scalp shines through my now white cropped mop! I've never been blessed with a crowning head of hair but since on preds its amost to the transparent stage. But when it starts to grow its coming through like baby hair all fluffy cant do a thing with it! Keeping it short is the answer for me. Good job my hairdresser is my niece I can call her for a mower cut anytime. Good luck with managing yours.💇‍♀️💇‍♀️

stellafmdm profile image
stellafmdm

Mine has gone all curly and is quite unmanageable! I'm getting it cut really short today!

Reeceregan profile image
Reeceregan

‘Fraid I’m also a member of this club. Long thick lustrous blonde hair goooonnne...replaced by Basil Brush fluff 🦊 cut off to a medium bob with a lot of hair extensions.💇‍♀️

Singr profile image
Singr

Oh yes thats me too. Losing hair by the handful in the shower. But replaced by fluff with the consistency of cotton wool. My hair was baby fine and never great in the first place but worse now.,

Angiejnz profile image
Angiejnz

Maybe I shouldn't comment because my hair turned red....ok it was a protest to warn bad news to stay away which has worked so far!!

Pamela60 profile image
Pamela60

I’ve had to go back up to 10 mg pred and now hair thin on left side . I’ve had thin , curly, frizzy now this one sided. Oh well we get in with it x

Primarose profile image
Primarose in reply to Pamela60

Hi Pamela60

I have less hair on the right side, I wonder whether it was due to the GCA part as that was where the worst of the pain was.

You'd laugh, it looked like I had devils horns sticking out of my head this morning.;-)

saffron52 profile image
saffron52

Hi Primarose

I have got the same problem and it was a bit of a shock when the shower was being blocked by me shedding loads of hair. I did some research and Folic Acid tablets were suggested to help hair growth. I have some on order (Folic Acid 400mg 240 tablets once daily £3.99p), I have not received them yet and the perceived wisdom is that they take about 3 - 6 months to really start to help. There are no real side effects listed, obviously they are pretty safe I should think because they recommend them to pregnant women.

I am also going the Argon Oil route, I love the stuff it smells lovely. To back that up I am being really gentle when I handle my hair, only very gently drying hair after shampooing and letting it dry naturally, brushing very gently and using E45 shampo which helps with my itchy scalp. Hope that helps its a real upset when something like you hair starts playing up, as well as having to put up with all the aches and pain of PMR. Take care and hope this helps a little. XXXXXX

Primarose profile image
Primarose in reply to saffron52

I've heard that Folic Acid helps, I may try that. Thanks.

Methinks that we should all stop eating the crusts off the bread.;-)

S4ndy profile image
S4ndy

Just had mine cut into short undercut pixie which is manageable for the head sweats and straw hair I have these days! Still need to use industrial strength hair glue to control it if I want a spiky funky look! No oil or conditioner seems to make any difference. Also no longer colouring hair. Grey hair don't care! My hairdresser said that young women are paying a fortune to get their hair to look grey :D Pred head ahead of the game lol!

HeronNS profile image
HeronNS in reply to S4ndy

Haha. I suppose the young women don't know that grey hair isn't really grey. It's a mix of the old colour and white. Which is why the young women who've coloured their hair grey look so stunning! My uncle was white by the time he was thirty and he looked so handsome with white hair and a young face. I wanted mine to do the same thing, but it just started going white slowly from a young age and is still not all white!

karools16 profile image
karools16 in reply to S4ndy

I am 71. Since being sent home from school, aged 17, for colouring my hair, I have coloured it until 2 years ago, when I let it all grow out and found the grey quite good. However, next week, it's cut and colour. I find when I'm not well, the grey gets to me. Plenty of time to go grey.

Ruadh profile image
Ruadh in reply to karools16

Grey is the 'new' blonde ! A chum of mine wanted grey hair, was determined until her hairdresser advised that 'Not possible' to dye grey ! We both laughed. Too funny.

GrannyReid profile image
GrannyReid

Hi there. Now got a mass of curls with the consistency of a Brillo pad.

piglette profile image
piglette in reply to GrannyReid

Sounds just like mine. It is better having it short though.

Paulamac77 profile image
Paulamac77

Oh how I sympathise. A combination of Pred and methotrexate meant It had got to the stage in January where my hair was like candy floss, coming out in handfuls and I was soooo tempted to have it all cut off and buy a wig. Needing a new shampoo and conditioner I tried OGX Biotin and Collagen (for no better reason than it was recommended for frail hair and it was on offer!) and, to my surprise I must admit, it’s helped a lot. There’s always a lot of hype about products like these but I have to say this product works for me. Not desperately expensive (£6.99 each in Superdrug).

Onwards and upwards Ladies, we will beat this illness.

hey_suz profile image
hey_suz

Hi Primarose, I discovered Nutrafol, a hair vitamin.

Works!!!

hey_suz profile image
hey_suz in reply to hey_suz

The reply box wouldn't let me say more so I started a new one. Nutrafol is not cheap, you can get it on the website or Amazon, but its working! Im not shedding anymore and I see new growth after just one bottle. My Rheumatologist approved the contents as well and Im on 6mg pred and 15mg MTX. Some comments online were that you only need a few bottles to jump start you, then you can switch to Biotin, a much more affordable vitamin. Good luck! We need every boost we can get as we heal! Im sure you are beautiful even with this current hair:)

Jamie345 profile image
Jamie345

Hi primarose I am battling trying to get my hair looking anywhere good enough to go to town, my grandson asked me why my hair sticks up on top of my head every morning I look like the Doc out of back to the future! No matter what I do it ends up looking awful, my daughter is a hairdresser so I have help but she cannot fix this problem, I have an appointment at a wig / hairpiece studio next Monday so I'll let you know how I get on, regards

Primarose profile image
Primarose in reply to Jamie345

It would perhaps be nice to wear a wig when you are going somewhere special. I did wear my second wig home from the shop last January this one is short the other is long, which it what my hair used to be.

I passed two neighbours who completely ignored me!:-)

At least your grandson doesn't call you bog brush bonce!

Hope you get on OK with the wigs, on seeing me with a proper head of hair my friend said I looked younger.

Ruadh profile image
Ruadh

I have found that the coconut oil has helped. I put on a light film all over, ensuring the ends were well covered. Left it on for two days. Not sticky, and a sun hat hid any traces of oil when I went out. Shall do it again at the end of the week - sitting inside watching Wimbledon finals !

sharonnorfolk profile image
sharonnorfolk

Hi Primarose, Mine has gone so thin it is unbelievable, I try Argan oil ( just wishful thinking I think). My nails are really brittle as well so trying oil on them as well.

HeronNS profile image
HeronNS in reply to sharonnorfolk

I think oil really does help, the texture at least. I found my hair even more unmanageable in a different way than it usually is and nothing really helped that except keeping it short.

ptm2018 profile image
ptm2018

Hi Primarose: Yes. It happened to me. And it is a funny thing. It started months after I started prednisone, like 8 months later. But as I have tapered to 1 mg. it is stopping. One of the things I did during that period of time, was not spend money on Nioxin. That was torture. Instead, I did something to keep my hair as healthy as I possibly could. One tablespoon of extra virgin olive oil the night before I would wash my hair and put a cap on. It helped keep my hair manageable. Also, I went for more frequent hair cuts to help strengthen my hair. Colored my hair every 8 weeks instead of every 5-6 weeks.

HeronNS profile image
HeronNS in reply to ptm2018

That makes sense, actually, because it takes a long time for hair to grow. I had a strange experience a while ago. I seemed to be losing hair in handfuls, but oddly what was on my head was thicker and more normal than it had been since several months after starting pred (same timeline as you I think). Then I realized losing the bad pred hair was coinciding with new normal hair coming back!

Stella3 profile image
Stella3

Hi I have the same thing. My doctor told me it was something called Telogen Effluvium....not that one can do anything about it. I have lost quite a bit of hair and my hair is dry and also like a bush! I live in the States and have just bought some of Trader Joe’s coconut mask for hair that you leave in for five minutes...also use Frieda shampoo (with lots of conditioner in it) also a spray in conditioner. It looks okay initially but the with the humidity goes back to sticking out like a Christmas tree! I have been trimming it on a regular basis, but I don’t think my hair is growing as fast as it used to.

Thanks for the suggestion of Moroccan Argon oil....will try that next! I think a hat in the sun is the way to go too.....oh well, I guess there are worse things!

piglette profile image
piglette in reply to Stella3

In my case Argon oil helped the most, but it was pretty pathetic against the haystack.

lcove profile image
lcove

Funny you say that. I've been on prednisone for over two years and my hair is like a kinky wire. I used to have very straight hair and now it is a wirey mess.

Croquetsally profile image
Croquetsally

Yes

I had serious hair loss, my hair is similar to you. I met a woman who said to me look at my hair it is so bad , the whole front and top of her hair was gone, she said be careful of the drugs you take,but she could not remember it,s name.

I now use caffeine shampoo it does not bring back your old hair,but it encourages growth of new hair to a certain extent.

I am happier now, l hope this helps.

Primarose profile image
Primarose in reply to Croquetsally

Thanks for your reply Croquetsally, I did try some silicon spray which my daughter ordered. My hair looked quite smooth for all of ten minutes!

It wouldn't do any harm for me to try that shampoo.

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