Will my hair grow back: Would love to hear from... - PMRGCAuk

PMRGCAuk

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Will my hair grow back

Meggsy profile image
17 Replies

Would love to hear from anyone who has experienced hair loss due to PMR as to whether it eventually grows back. I am having more and more difficulty covering my scalp with my Donald Trump comb over - using lots of hair spray.

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Meggsy profile image
Meggsy
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17 Replies
scats profile image
scats

I believe the hair loss is caused by the pred rather than PMR.

I doubt anyone can give you a definite answer as we are all different. I lost a lot of hair but never got bare patches. My hair changed completely from straight and very fine, to coarse and wavey and I still find masses of hair in my brush every morning but as I always had a lot of hair I still have a reasonable covering.

I have been on pred for3.5 years plus now.

Meggsy profile image
Meggsy in reply to scats

Oh yes, I am just coming out of the wavy stage and prior to that it was sort of zig zag frizzy. I thought pred was supposed to cause hair growth and that’s why I assumed it was the PMR. I guess it is what it is and I am grateful that I am not having as difficult a time as some other people seem to be having.

I have only been on Pred for 17 months and have just this am dropped to 7.5 mg with fingers crossed. 🌻

PMRpro profile image
PMRproAmbassador in reply to Meggsy

Makes a lot of the rest grow! My eyelashes are incredibly thick. My hair did shed more with PMR and improved with pred although I was switched to a different corticosteroid for a time (methyl pred) and that made it go like a brillo pad. But when I stopped that and went to prednisone my hair gradually got back to what it was like before. With methyl pred I grew a magnificent balck beard ;)

Meggsy profile image
Meggsy in reply to PMRpro

Wonderful, you have given me hope for the future, though not with regard to the beard. However if needed my trusty epilator would take care of it. One good thing is my normally soft bendy splitting nails are now strong and beautiful.

Thank you PMRpro for the time, effort and invaluable advice you contribute to this site.

Marea 🌻

PMRpro profile image
PMRproAmbassador in reply to Meggsy

Yes - I have wonderful nails for the first time in my life!!!

Meggsy profile image
Meggsy in reply to PMRpro

💅

PMRCanada profile image
PMRCanada in reply to PMRpro

Me too! Always chewed mine but now they’ve grown out and are quite hard. Mrs. Nails would be proud.

scats profile image
scats in reply to Meggsy

Mine went through the frizzy stage at about that time and I had it cut shorter. The last 2 years it has settled down.

Hello Meggsy

I’m probably not the best person to ask but l want to empathise with you.

My hair became very thin on Pred/Methotrexate but unfortunately l had to have Chemo but as a result my hair has not grown back as it should 🤦🏻‍♀️ so l have continued to wear a wig.

Have you tried any supplements? I’ve done it all, except for ‘Regain’ as l didn’t like the sound of the side effects.

I’ve taken all the supplements & strangely enough l found the Folic Acid gave it a boost. I’ve taken courses of Biotin but not convinced it made any difference but it didn’t do any hard as it’s a water soluble vitamin.

Have you tried any of the ‘thickening’ shampoos? I’ve tried them all but l’m about the only realist as l don’t think they make any difference.

I had a Pixie Cut two weeks ago to help me feel cooler & l actually think it looks better, meanwhile it’s on with the Fabulous Wig despite the temperatures outside!

Good Luck 🍀

Kind Regards

MrsN 🌷

Meggsy profile image
Meggsy in reply to

I did take biotin for a while. I read up on Regane and apparently if you stop using it your hair reverts to its previous state, so decided against that.

I used to have what I called my Judy Dench cut, but my hairdresser now leaves the top longish so that I can spread it over the bald patches, mainly around the crown towards the back.

I do hope you are not suffering too much from the heat. It’s winter here in Aus but with temperatures in the low 20s it’s very pleasant - cold nights, warm days. I would love it like this all year round. The jonquils and azaleas are flowering early, not realising they should still be sleeping.

All the best with your health Mrs Nails and thank you for all your wise advice given on this site. Marea 🌻

PS - Do you have fabulous nails?

Maisie1958 profile image
Maisie1958

Hi Meggsy, my hair did really thin about 4/6 months into prednisolone treatment after PMR diagnosis but seemed to thicken up again - and is ok now 4 years on, but I certainly sympathise with you.

Just wondering if it would be worth checking with your GP if your thyroid and iron levels etc are ok? All the best x

Meggsy profile image
Meggsy

Thank you for your reply Maisie 1958.

I am only 17 months on pred, so maybe there is hope yet. I keep thinking it is growing back and then I think nah!

My blood tests are all ok, but I don’t think they include thyroid.

Once again thank you - Marea 🌻

Sofarbrnun profile image
Sofarbrnun

I've been on pred for a little over 2 years. As I was weaning down to 2 or 3 mg I started having quite a bit of pain and inflammation in my knees. I went for a checkup with my new GP about 4 months ago, and explained the problem. He gave me a steroid injection in each knee. Not long after, I noticed considerable thinning on my scalp and even my eyebrows. But alas, my fuzzy little mustache is doing just fine! Finally picked up some Nazarol shampoo, as was recommended here, so I'm giving that a try, and taking a hair/nail vitamin supplement.

Meggsy profile image
Meggsy

Wow! Just from one injection,

Yes, I too have managed to keep the upper lip fuzz, but my epilator takes care of that.

I’m not sure if the Nazarol is sold in Australia, but I will certainly check it out.

Thank you for your reply. 🌻

Truelies profile image
Truelies

I had hair loss also. The research that I found , was the hair loss was due to the tapering of the prednisone. Once I was on a maintenance dose it grew back.😉

PMRpro profile image
PMRproAmbassador in reply to Truelies

Do tell me about that research - never seen that mentioned at all.

Truelies profile image
Truelies in reply to PMRpro

I did not keep the articles. Sorry.

But there are articles out there.

I began the very high steroid doses in may of 2018. Then began the very slow process of tapering down.

My daughter found a shampoo that helped with the hair growth.

Finally, now back on track.

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