Hair loss helped! : Over the can past months I’ve... - PMRGCAuk

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Hair loss helped!

Jonimoroni profile image
22 Replies

Over the can past months I’ve noticed more and more hair in my brush- I just brushed less - once in the morning usually - and very gently. But it niggled….I can do without any more stuff to cope with! (The appetite!! The whiskers!!)

So, two weeks ago I bought a bottle of Plantur shampoo, and here’s the photo-evidence from my hairbrush! On right, from ‘before’, 2 weeks ago., in the middle after 1 shampoo, and on left after 2nd shampooing today. Brilliant!

But !!! I’ve also, in the same period had to increase my Pred dose from 5 up to 40 due to a flare - could that be what’s behind the sudden ‘cure’ ?

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Jonimoroni profile image
Jonimoroni
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22 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

That’s a mighty high increase…..reasoning behind it? Sight issues?

Would say the improvement in hair is shampoo related…. but who knows! Whatever, hope it continues.

Jonimoroni profile image
Jonimoroni in reply to DorsetLady

Not sight, mercifully- GCA flare with new PMR ( pelvic and shoulder) pain, big increase in inflammation markers. Starting Tzb soon. Was hoping to get a new opticians sight test, but here in Tayside things have gone a bit haywire with Covid numbers.

But even little things help so much. Propping-up my positivity! Turmeric in food and making a silk pillowcase on today’s list. Also - ‘cos I’m a thrifty type- saving my brewed coffee leavings for a hair rinse- recommended!

Hope you’re well! My daughters in Dorset house hunting for a first home - thinks it’s the BEST!! x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Jonimoroni

Good thanks…..hope your daughter finds somewhere! …and I agree with her views! Don’t think my coffee remains would do - decaffeinated - think they need to be caffeinated, like the shampoo!

Good luck with TCZ.

PMRpro profile image
PMRproAmbassador

I found the hairloss I'd had with PMR improved on pred - I suspect the blood flow to the scalp was not as good as it might have been.

Jonimoroni profile image
Jonimoroni in reply to PMRpro

Mm, that sounds convincing..has improvement been maintained? - you’re on a low long term dose now I think?

PMRpro profile image
PMRproAmbassador in reply to Jonimoroni

Not exactly LOW no - 15mg!! However - I now have an awful lot of wavy hair! Technically described as Textured 2b I think but somewhere between 2b and 2c here:

myrevair.com/blogs/news/how...

I always did have curly hair, then it went very straight with PMR. It isn't as well behaved as it was in my 20s but I did have an outstanding hairdresser then. Here they can only cut to blow dry and thanks to Covid and having to let it grow I've decided to give in! I will not pay them a small fortune so it can do its own thing by the time I'm home ;)

Jonimoroni profile image
Jonimoroni in reply to PMRpro

No -That’s certainly not A low Pred dose! My mistake sorry! 🤭Interesting hair research !I think I’m 1.b, but beginning to get wirey slightly kinky as more grey grows in….. self-cut too, big sharp dressmakers scissors do best job for me.- the back might be a bit uneven, but I can’t see that! - and I know -£60 for a hair cut is ‘normal’ hereabouts!!!! No way!!

- - It’s amazing what you get to know in this amazing place - you’re brilliant!

Poshdog profile image
Poshdog in reply to PMRpro

I have thrown the towel in and bought a wig! Its wonderful!

PMRpro profile image
PMRproAmbassador in reply to Poshdog

No thanks - not in temps of 30+ for months in the summer! I don't mind my shining white wavy lions mane - very 2021 celebrity it seems!

Poshdog profile image
Poshdog in reply to PMRpro

Not as lucky as you! No lions mane here, more like electrified rat's tale!

JanetRosslyn profile image
JanetRosslyn in reply to PMRpro

My husband said my long wavy hair looks like a lion's mane, then said I looked like the princess in Tangled (Disney I think). He's so sweet. To be honest I look more like a cavewoman!

PMRpro profile image
PMRproAmbassador in reply to JanetRosslyn

Mine never says anything ... Not unless I TELL him I am going or have been to the hairdresser...

Viv54 profile image
Viv54

I had a hair loss problem when i started Pred , i was shocked when i brushed my hair ! i first noticed it when i was high amounts of Pred . Happy to say the lower the dose the better the hair. Good Luck x

Daffodilia profile image
Daffodilia

I found it got better on less pred

MaritimeMags profile image
MaritimeMags

I have been on Pred three and a half years now. I noticed hair loss after first six months. Hair dresser commented as well - but they see so many hair types. I have been on a very low dose of Pred for about two years and, now, my hair seems to be growing/thickening again. It has gone ‘wiry’ though but this may happen as OA sets in. My hairdresser has also warned that I do a test at home if home-colouring my hair. Apparently Covid and vaccinations etc can cause a reaction on the hair. 🙂

Jonimoroni profile image
Jonimoroni in reply to MaritimeMags

Oh that’s interesting! Im sure that hair and nails reflect much about how we are inside - Thanks!

PMRpro profile image
PMRproAmbassador in reply to Jonimoroni

Often hair loss in the first 6 months after starting pred isn't the pred but the PMR/GCA.having an effect, possibly on the blood flow to the scalp.

LookingForHelp1 profile image
LookingForHelp1

Shock to the body (physical OR emotional) can cause something called Telogen Effluviam (hair loss 3-6 months after the shock aka trigger event). It’s temporary & your hair will eventually grow back IF you identify your trigger & get it under control. Doesn’t matter what shampoo you use now. The hair that went into the Telogen phase will fall out no matter what. My trigger was a PMR flare that caused my CRP rate to spike to 114 back in December 2020 (The worst I have ever felt since my PMR journey be an in October 2020). My hair fall started Mid April 2021. Went immediately to my Dermatologist who explained TE to me since I had never heard of it before . Hang in there! It will get better!!

Jonimoroni profile image
Jonimoroni in reply to LookingForHelp1

Fascinating, thank you! This agrees in principle with PMRpro’s answer above, and I’m inclined to agree, it feels convincing to me - even though I’ve invested about 7 x times my usual spend on a bottle of shampoo- usually that’s enough to persuade me😂

Maltesemama profile image
Maltesemama

Hi Joni, after 5 months of pred (40 mg). I lost 1/2 my hair. It’s coming back. Be sure if you can to take Biotine to help it’s return. Good luck (I’m tired of wearing wigs!) 😆

Jonimoroni profile image
Jonimoroni in reply to Maltesemama

Hi Maltesemama - I’m so glad your hair is regrowing for you - there’s enough to cope with without these disconcerting extra symptoms. The replies people have given here have been really interesting, what sounds most convincing to me is PMRpro’s suggestion that the inflammation starves the hair root…..but there’s no harm in trying caffeine containing shampoos etc as well - they’re more likely to harm your pocket than your hair, probably! I’ll look up Biotine- thanks for the tip! Hope you continue to improve

strawclutching profile image
strawclutching

Hi Joni, I started losing hair after about three months on Pred. Nine months into treatment and I've lost about three quarters of my lovely hair. I had my first wig delivered yesterday, and it's so hard getting used to. My current dose is 8 mgs. I hope it starts growing back soon, but I'm not holding my breath.I did some research on caffeine shampoos, and apparently you can absorb quite a lot of the caffeine through your scalp and into your bloodstream, which rather put me off as I avoid caffeine like the plague. I don't know whether the extra caffeine would have anything to do with your flare, but it might be worth looking into.

Anyways you have my sympathy. What with the fat ankles, baggy eyes, baldy bits, thinning skin and where has my bum gone? Oh yes, it seems to have shifted up and round to my belly! Wonderful.

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