hair loss

[zoey12]

I have lost a lot of my hair and you can see my scalp and the back of my head Think it’s stopped dropping out now mostly anyway. Been a mess gor about 5 months now. But I have been off pred now for 3 months Does anyone know if it will come back eventually or not. Y th Hank’s

[lesley2015]

Hi, Sorry to hear your hair has fallen out, mine did too, it went very thin!

However, once i came down on my dose it grew back, albeit curlier than it was - but grateful it came back. I am still on a low dose but it doesnt seem to cause a problem now with hair loss. It will take a while but hopefully you will have your usual hair soon. best wishes

[zoey12 in reply to lesley2015]

thank you

[bussell]

Same problem! Combined with fat face, all a bit depressing. Just hope eventually it will improve. I do take a daily Nutrihair tablet and keep fingers crossed.....

[Nextoneplease]

so sorry to hear this zoey12 and can sympathise. My hair used to be my crowning glory…..it’s now very thin, I’m afraid. I take a vitamin B complex supplement daily and hope for the best. Also I use volumising shampoo and mousse with has some beneficial effect.

Good luck and chin up 😊xx

[Blearyeyed]

If you are off Pred I would suggest that you get your Vit B 12 and Folates blood tests done at the GP.Steroids can cause hair problems but they can also cause problems with vitamin and mineral Deficiency, and these are more often a cause of hair loss.

Have the tests done before you start any supplements as this would effect the accuracy of your result.

If you are low or deficient you will be offered supplements or injections.

A combined vitamin and mineral supplement taken after your fattiest meal of the day may also help you to improve your stored nutrient levels , get one that includes vitamin K 2 which can also improve hair growth.

Otherwise , have you been under any stress which could have caused alopecia or is there a history of hair loss during I'll health in the family.

[BabyRuby1]

me too! So depressing. I lost 2/3 of my hair. It’s been a year and now I have 5” of new growth mixed with longer hair. Hooray! It took a year. I also take hair growth supplements

[whitefishbay]

Sorry to hear it. My hair became like a haystack but as I reduced back to normal. At least it is hat weather. x

[Jackoh]

just testing if this will go first then I’ll reply!

[Jackoh]

I lost a lot of my hair. It just seemed to break off just after I’d had covid. It has slowly started to grow back and I now have a layered curly bob rather than a straight bob. I can really now see a difference in the strength and length after just over a year really. I have been using a shampoo and conditioner from my hairdresser. 💐

[Poshdog]

I have invested in a wig. Nor for all the time just those really bad hair or weather days. I love it

[Daffodilia]

I lost some hair but came back as I reduced pred

[Octi]

I lost a lot of hair twelve months ago thanks to Pred, and it really knocked my self confidence. I bought a hair piece but only had the courage to wear it twice as I thought people would know - silly really.

t is now growing back with a completely different texture to my ‘real’ hair so it doesn’t lie well with it - it’s like having an invasive weed on my head, but one I’m very grateful for! Hope yours starts to grow back soon x

[SnazzyD]

My hair fell out twice on my GCA journey. Once 5 months after diagnosis from the systemic shock (most likely) and second when my adrenal function was low. In the growing back phase it was all sorts in between. It is falling out for third time due to Covid and it started in earnest about 3/4 months after. I believe it is slowing down so I may be able to keep the wig in a box. It’s an annoying business for sure!

[LemonZest11]

This happened to me too Zoey, but once I reduced the pred it stopped. 4 Brazil nuts each morning have definitely helped with regrowth, they are rich in selenium which helps with this. Worth a try 🤞

[CarolF1312]

It happened to me too about 6 months after starting Pred. I'm still not sure if it was a result of the onset of PMR or the higher doses of Pred. It was so upsetting, I know it sounds ridiculous but it upset me more than the pain and stiffness of PMR. I lost about half my hair which was serned a lot as my hair is fine and fair.Good news is it has gradually grown back albeit a different texture much more curly. I'm now 2 1/2 years in and on 3.5 mg Pred. I also take a hair supplement.....too scared to stop taking now!

I hope yours improves soon. I'm sure it will xx

[zoey12 in reply to CarolF1312]

yes I think I am same after 6 months on pred hair started falling out. I didn’t really have any pain by then. So think it’s the pred not the pmr. Been off pred 3 months now. It’s stopped falling out. Well mostly. But not growing back It seems a bit slow thought it would grow more quickly

[PMRpro Ambassador in reply to zoey12]

You can't really tell - and it often takes about that long for the effect of any illness to become obvious. I had hair loss with PMR - wasn't pred, I didn't get to try it for 5 years. The condition of my hair also changed with PMR. Pred has changed it too but it gets blamed for a lot it isn't always guilty of.

[MiniSpec]

After we had Covid in Oct 2021, my wife lost a lot of her hair. It started to thin out at around Christmas time, and by March was noticeably thinner to the extent that it was possible to see her scalp through it. However, it started to grow back again during the summer, and now she has a full thick head of hair again. Not only that, but her hair is now much more wavy than it was before, almost like she's had a perm.

[Appledore6]

Hi Zoey I had extreme hair loss a few of years ago I was in a dreadful state with it. It turned out it was not the prednisolone but Omeprizole that the G.P. had prescribed. I was told by the consultant that he saw quite a bit of it. I stopped the medication and started using Apple Cider Vinegar instead. I had a really short hair cut and within a couple months my hair grew back beautifully. I also started using chemical free shampoo and conditioner from a natural foods shop and have never gone back to usual stuff. Good Luck hope this helps.

[YummyBear in reply to Appledore6]

Interesting article, thank you. Could I ask how you take apple cider vinegar, do you dilute it in water?

[Appledore6 in reply to YummyBear]

No water. I have 1 table spoon just before my meal. Its vile every time. As soon as you have food you forget the taste.

[Nextoneplease in reply to Appledore6]

Hi Appledore 😊This is very interesting. How many times a day do you take it?

[YummyBear in reply to Appledore6]

You must be very brave! The acidic taste would send shudders through my body! I might try this though, as my hair loss of nearly 3 years (started pre Covid) is chronic. Do you know the science behind ACV helping with hair loss? I had private consultant Dermatologist check me out a year ago, she said it was TE acute hair loss, arranged blood tests but they were deemed normal! I was prescribed a Betnovate lotion for inflamed scalp but no improvement! Many thanks

[Appledore6 in reply to YummyBear]

Sorry but ACV is not for hair growth or damage. GP medication for reflux caused hair loss. I use ACV instead of prescribed medication for reflux. Hair grew back very quickly when I stopped the medication.

[PMRpro Ambassador in reply to Appledore6]

Does it improve the reflux?

[Appledore6 in reply to PMRpro]

Yes I had to take daily for a few weeks and it is vile but now I never get reflux. But you must take ACV with the "mother" in it. Happy New Year to you.

[zoey12 in reply to Appledore6]

I have taken Naproxen. I have spelt that wrong. For indigestion came off it 3 months ago

[Appledore6 in reply to zoey12]

When I saw the gastro consultant as I had had a stomach ulcer go on me and major bleed it was he that said he sees a lot of people with hair loss because of binders and fillers/coatings on prescribed anti acids. And of course many people on steroids take them to protect stomach. Its a bit of a vicious circle for us. I feel that any medication that causes severe hair loss is a step to far. I was distressed over it and that cannot be good for anyone trying to recover from a difficult time in their life. I do hope that this resolves for you and you find your trigger that has caused this for you.

[PMRpro Ambassador in reply to zoey12]

No you haven't!!

[zoey12 in reply to Appledore6]

good idea natural shampoo. I will look into that also the covid thing. Looks like a few people have had hair damage with covid it could be possible with me I suppose don’t think most doctors will realise covid can cause hair damage.

[PMRpro Ambassador in reply to zoey12]

ALL hair care products are "chemicals", no such thing as "natural" shampoos. Water is a chemical.

nrc.gov/reading-rm/basic-re...

[orangemax]

Hi, Zoey,

Sorry you're going this. I've been through it 3 different times. The first time, it started coming out 3 month after I'd contracted a strange virus on a cruise. The second time, I'm not really sure why it came out. And this last time almost a year ago, I asked my dermatologist about it, and he did a biopsy, which came back "alopecia areata". Basically male pattern baldness. (I'm a female) Anyway, I started shopping for wigs. But my hairdresser said she could see new growth, and not to be in a rush. So I started taking collagen, B vitamins and Folic acid. Yes, it came back beautifully, and yes, it came back curlier each of the 3 times I lost it. (It's REALLY curly now. My hairdresser told me not to use really hot water when I wash my hair, as it loosens the follicles. Will this happen again? I don't know. These days I'm just taking everything one day at a time. Good luck to you.

[zoey12 in reply to orangemax]

thank you. I think I will try folic vitamin good idea about not using very hot water. I do. Do I need to use cool water. Thanks for the tip

[YummyBear in reply to orangemax]

Thank you for telling us your experience. I will try the supplements you have mentioned to see if I have any improvements.

[orangemax in reply to YummyBear]

Hi, YummyBear. I wish you luck. It is emotional to go through this. But from what I've been seeing, most of us do get our hair back. And "curlier" seems to be fairly common.

[orangemax]

Hi, Zoey. Yes, I love the feel of the hot water on my hair, but it's not a good idea, if your hair is falling out. I used comfortably warm water, because I really couldn't stand cold water. But cold water does close the follicles, I'm told. So probably better. Also, I'm sorry, but I think I forgot to mention, I took a biotin and karatin combination vitamin also. Biotin is a B vitamin.