Hair loss: Hi all. Just a quick question. I have... - PMRGCAuk

PMRGCAuk

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Hair loss

Holycow2 profile image
27 Replies

Hi all. Just a quick question. I have PMR and am taking Pred 7mg (had a flare) so went from 1 to 7 which has sorted it. The question I have is can PMR cause hair thinning/loss? I have mentioned this problem to my Dr many times and he is under the belief that it’s probably caused by the menopause. I started the menopause almost 9 years ago and am hoping I’m coming to the end but the hair loss is distressing

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Holycow2 profile image
Holycow2
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27 Replies
PMRpro profile image
PMRproAmbassador

I lost loads of hair with PMR (wasn't any medication to cause it) for the first 5 years. It improved with pred. Others find hair loss occurs with pred. Everyone is different.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Plenty of related posts -and have a look at this -any illness can cause hair loss -

healthunlocked.com/pmrgcauk...

More in FAQs as well -

healthunlocked.com/pmrgcauk...

Holycow2 profile image
Holycow2 in reply toDorsetLady

Thank you! You really are so helpful I’m amazed!

jinasc profile image
jinasc

Do some research on Folic Acid. It can help but if you do decide to try it - before you do so check with your Pharmacist that it is compatible with any proscribed drugs.

Also any OTC's if you are taking any.

Holycow2 profile image
Holycow2 in reply tojinasc

athank you! I will definitely look into this! I’m probably luckier than some as I just have thinning on the crown but even so makes me very self conscious

autumnlass profile image
autumnlass in reply toHolycow2

My GP said it was ‘ageing’! I think as PMRpro said it’s the PMR - I noticed clumps coming out months before diagnosis of PMR in July 2020. Also on the crown mostly and fringe. I find folic acid halts the shedding. Medication doesn’t help either. Thickening shampoos help confidence I find. 🍀

Holycow2 profile image
Holycow2 in reply toautumnlass

Yes! Mine was before I even knew I had PMR! I think I will look into the folic acid. Thanks!

autumnlass profile image
autumnlass in reply toHolycow2

I also take marine collagen capsules from the A store! I think they help too. The bovine collagen capsules really upset my tummy! Good Luck! 🍀

Holycow2 profile image
Holycow2 in reply toautumnlass

Thank you! I will certainly try

SnazzyD profile image
SnazzyD

Hair loss is a common response to a systemic illness and can occur a few months after the main event. Initially my hair was lovely when on high doses of Pred but nearly all fell out 5 months after diagnosis with GCA, then the next big one was due to a bad bout of adrenal insufficiency on low doses. I am well on the way to losing most of it again probably due a very nasty bout of Covid in late July. In between it has been straight, curly, mad scientist, lovely and limp. I keep an open mind now.

Hunter134 profile image
Hunter134

I am going thru the same thing with hair loss.I was thinking it was due to being on prednisone for over 3 years.I ll need a wig soon.lol

Holycow2 profile image
Holycow2 in reply toHunter134

Need a cure 😂

Hunter134 profile image
Hunter134 in reply toHolycow2

Sure do lol

DianeMills profile image
DianeMills

Yes i got hair loss after taking prednisone, that was seven years ago. I wear wigs now.

autumnlass profile image
autumnlass in reply toDianeMills

I’ve seen some lovely ones online. Never have a bad hair day! Where do you get your ones from? 👱‍♀️

Twopies profile image
Twopies

yes, it’s wafting through the air as we speak. Part of the problem is scalp dryness caused by the prednisone—overall skin dryness. My hair loss was really bad in the beginning, then not so bad, now bad again. Just part of the autoimmune thing; my curly hair feels like a cloud of fuzz. I read that you can do a pre-shower treatment of olive oil on the scalp,but haven’t tried it yet.

autumnlass profile image
autumnlass in reply toTwopies

Sounds like me. ‘Cloud of Fuzz’! Since starting on MTX 7 weeks ago! Bit better now. Found that Tresemme Keratin Shampoo and Conditioner has tamed it a bit. The damp and wet of November fuelled the frizz too. 😂😂

Holycow2 profile image
Holycow2

I have bought so many even the most expensive and none have helped! I have fine hair as it is and the thinning just makes it look worse😭

Paperroses profile image
Paperroses

I always had thick very straight long hair. Several months after I was diagnosed with pmr my hair started falling out in handfulls . A few months later it started to come back in but this time curly . I now have beautiful long curly hair if I control the frizz. I'm currently on 3mg pred.

PMRpro profile image
PMRproAmbassador in reply toPaperroses

How DO you control the frizz?

Paperroses profile image
Paperroses in reply toPMRpro

After I shampoo and condition I let hair dry by itself and when still damp I wrap in spongy curlers to keep the hair curled but but smooth. I wear it down a few days and then pull in a pony tail and then I use a curling spray to tame it down and curl the ends. If I get caught in the rain ,Its all over. My advantage is long hair that I can twist and wrap that also tames the frizz.Its harder to control in hot humid summer weather.

PMRpro profile image
PMRproAmbassador in reply toPaperroses

Mine isn't pony tail length (I don't think anyway!). Maybe it is if it were straighter. The top, longer, hair is smooth waves/curls but the nape hair is only just getting to a length with curls rather than frizz. I last had it cut just before the first Covid lockdown. By the time hairdressers reopened I was just past that awful growing it out stage so I persevered.

I used to have long curls many years ago but had superb hairdressers for years who could cut it with curls. Here they can barely cut it if it is straight and you want to blow dry!!! Nightmare! They get 3 tries - the last 2 were better then the one before last, after years, suddenly lost it and insisted on trying to blow dry it as SHE wanted it. Just doesn't work!!! The last one was brilliant for 2 cuts - then no idea what she did! But then came Covid. Saves a fortune now I have embraced the curls ...

MiniSpec profile image
MiniSpec

My wife lost a lot of hair earlier this year, but we think that was a response to having Covid the previous Autumn. Anyway, as well as buying a couple of wigs to wear for work, she also greatly increased her vit D each day, and added Folic Acid. These two things combined seem to have done the trick, and she now has a full head of thicker hair than she had before.

Predderman2020 profile image
Predderman2020 in reply toMiniSpec

great tip. What is her pred dose now?

MiniSpec profile image
MiniSpec in reply toPredderman2020

She's not on Pred. She doesn't have PMR, I do.

I was commenting on the fact that my wife lost her hair after having Covid. Apparently a lot of other women have lost theirs as well since having Covid, but because she took lots of Vit D and Folic acid, her hair has returned and is now thicker than ever.

Predderman2020 profile image
Predderman2020 in reply toMiniSpec

thanks !

Holycow2 profile image
Holycow2 in reply toMiniSpec

Thank you!

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