hair loss

[NormaB]

hi I’m a 74 year old female and I’m experiencing fairly severe hair loss I think due to prednisone. I’m thinking of trying hair growth products. Any recommendations?

[PMRpro Ambassador]

How long have you been diagnosed? Have you got GCA or PMR? And what other medications do you take along with prednisone?

Pred often gets the blame - but a lot of things happen about the same time. Like a lot of other serious illnesses, GCA and PMR can cause hair loss in themselves - but you usually don't notice it for some months, Omeprazole has also been blamed for hair loss/

Now you have posted, you will see a load of Related Posts listed with a wide range of discussion on dealing with thinning hair.

[NormaB in reply to PMRpro]

Thanks for your reply. I was diagnosed with PMR last October and GCA in July. My meds are prednisone , omeprazole , enalapral and aspirin.

[nallufl24]

About 3 months after starting prednisone my hair was coming out in clumps. I wanted to cry when I cleaned the bathroom. Hair was literally all over floor and shower. Nothing helped. When I got to 10 mg it stopped falling out but looked like a Brillo pad. It was just there. No style or life. Suddenly it not only started growing again but it is now thicker than it ever was.

Many people on here said they took different supplements but I didn’t want to put one more drug in my body. I kept trying different topical hair thickeners I would find in beauty stores but nothing really helped. I simply had to wait til the prednisone was low enough.

[NormaB in reply to nallufl24]

Your response helps me feel a bit better as I’ve just tapered down to 10 mgs prednisone so fingers crossed. Thank you

[Plantingwithfaith in reply to NormaB]

It was the magic under 10 that stopped the falling out and I used I Grow vitamins and Vegemore serum. They worked for me. Finally getting thicker too. Good luck hair is important for our heads 🤗

[SnazzyD]

Initially on 40mg Pred my hair became thick and lustrous. Then it fell out very suddenly in clumps 5 months after diagnosis with GCA when I was on 18mg Pred. I had to wear a wig on the holiday it timed itself for. It started to grow back when I was still on 18mg a few weeks later. It is common for people to shed hair or skin after a systemic upset to the body so I wasn’t surprised. Every time I had an upset after that it thinned out again for example, when I had a period of low adrenal function on doses under 10mg. It also happened after Covid last year after being off Pred for 2 years. I didn’t bother with any remedies or potions but decided to let my body do what it thought best while I tried to look after it.

[SheffieldJane]

My hairdresser was helpful when it happened to me. She gave me a good shorter cut and recommended products by Kevin Murphy, particularly volumising ones. I also used drops of essential oil, Rosemary, rubbed into my scalp with coconut oil. I didn’t resort to expensive products promising miracles, so cannot report on them. It wasn’t Alopacea in patches, my daughter had that, it was thinning all over. It stopped and is near normal now.

[DorsetLady PMRGCAuk volunteer]

hi,

See related posts - or these from FAQs -

healthunlocked.com/pmrgcauk...

[Saffron23]

Hello NormaB

I too had the same problem, I now take folic acid every day ( no more than 400mg per day) and I do think this has made a huge difference. Give it a few months and all going well you will see some positive results. It’s worth a try. All the best 😊🌸

[NormaB in reply to Saffron23]

Thank you I will.

[Holycow2]

Hello! The same happened to me. I was advised by someone on here to take folic acid and have been taking it a few weeks and have noticed a difference!

[NormaB in reply to Holycow2]

Thank you

[Daffodilia]

I think it might be the PMR - my hair improved as I got better and was on less pred

[NormaB in reply to Daffodilia]

Thank you

[RachelJDH]

Losing your hair is amazingly distressing (oh no on top of everything else...). My hair decided to fall out about 18 months in to the dread PMR pred journey. My hairdresser refused to put any chemicals on it just trimmed it. I was recommended Nioxin shampoo and conditioner. My hair recovered but that could just be timing but now it is curly too. WHAT CAUSED THAT!!! Pointless using straighteners as it makes it dry and more curly. Moroccan oil also helps. My hair has fallen out before at times of stress and illness. I suspect it is as likely to be the PMR as the Pred. As if we need anything else.

[DorsetLady PMRGCAuk volunteer in reply to RachelJDH]

Any illness actually….my mother was a hairdresser all her working life - and well into her 80s and always knew when one of her clients had been/or was ill.

[PMRpro Ambassador in reply to RachelJDH]

I LOST my curls - more the swing that gave it style - with PMR, the texture changed and it fell out. Definitely not pred, wasn't on it for the first 5 years.

[Gossiplady in reply to RachelJDH]

Hi RachelJDH! I too developed curly hair while on the higher doses of Pred, and I was secretly pleased, but as I tapered down, curls disappeared and now at 1mg my hair is awful, stands up straight and is coarse! Taking Biotin in the hope that one day I will return to my former self! Lol.

[agingfeminist]

my hair fell out in handfuls at about 9mg after a couple of years at a much higher dose. Tried a couple of products, but decided it was a waste of money while on pred and still with PMR.

But 4 years on now at 3mg and hair has been growing back over past few months. I still wear colorful scarves.

I ought to add that hair loss didn't bother me because of scarves. However, my overall physical weakness and debility at 3mg is completely destroying me.

[Flutterbies57 in reply to agingfeminist]

I am in the physical weakness stage too. Should we be in this state? I’m not sure what to do about it . I plod along doing physical work in my garden on dry days, but I don’t get fitter , I get worse.

[agingfeminist in reply to Flutterbies57]

are you also in the zombie zone? It is so wretched. My adrenals are definitely stuttering but I am also not recovering from muscle myopathy (the steroids at 60mg -40mg for GCA destroyed my upper leg and arm muscles in a very short time. I could see them disappear, especially the leg muscles). I have spoken to my GP, who is excellent with rheumatology as a speciality. I have had all the usual suspects checked because I am so weak, but the verdict is steroid induced myopathy. Will it improve when I stop taking steroids completely (on 3mg now)? No one knows.

I can't do exercise but I do keep moving ...and have from day 1. I also do a little in the garden and I do my housework...tiny and totally exhausting packages of activity. I also walk when I talk on my cellphone

I have tried all sorts of exercise none of it helps. Someone on here recommended qigong. Here is the link. I can do a few minutes a day

youtube.com/watch?v=cwlvTcW...(Not working as expected?)

Please let me know if you do find anything that helps. But do keep pottering in your garden.

[PMRpro Ambassador in reply to agingfeminist]

What steroid are you on? I had steroid myopathy on methyl prednisolone but on switching to prednisone it improved quickly. I/d never had problems with prednisolone either.

[agingfeminist in reply to PMRpro]

Just prednisone. How long did it take your muscle myopathy to improve. My doc says it varies a lot between people (from recovery to none). Did you do anything that helped (other than switching drugs)?

[PMRpro Ambassador in reply to agingfeminist]

Pretty much as soon as I stopped the methyl pred. All I did was walk - I'd got to the stage I couldn't walk far but I just kept going. The methyl pred had also lead to achilles tendinitis when my numpty of a GP gave me a quinolone antibiotic for a UTI, "I've never seen that before" she said! So for the entire summer I had been on crutches for that but between September and Christmas I had progressed from the shortest circular path around the village on crutches to the longer one without. I had also switched to low carb eating but changed nothing else.

[agingfeminist in reply to PMRpro]

Thanks. I will persevere with the walking. I have tried increasing very gently ...but nothing gets easier. I will plod on (literally)....bit like waiting for the adrenals to wake up...maybe at some point muscle regeneration will begin.

I also went on low carbs for 4 years (now at 3mg) , but recently started losing weight despite my best effort to eat well and regularly, so have slipped in some bread that I make (kneaded with a dough hook so v easy).

Sometimes feel like I am withering away.

[MiniSpec]

In Oct 2021 my wife, my son, and I all caught Covid. It wasn't a pleasant fortnight for any of us, but at the end of it we all recovered, or so we thought. However, I ended up with long Covid, and my wife started losing her hair. It continued to thin for around 4 - 6 months, but then started regrowing again.

When it grew back it was curly instead of the normal gentle curves she normally had. However, over time, as her hair grew out, the curls grew out as well, and now it's back to how it was before we were all ill.

So there is light at the end of the tunnel, and the tunnel is time. The problem is of course that none of us knows how long the tunnel will be. My wife wore a wig to work while her hair was thin, but within a year she was back to showing her own hair, and now you'd never know she went through any hair loss.

[NormaB in reply to MiniSpec]

glad you’re all well now and your wife has her hair back. Thank you

[Mumdadlove]

I was diagnosed with GCA last December, my hair started falling out in June on 15mg pred, I’m lucky I have really thick hair so can loose a bit, for the first time when cut and styled my hairdresser didn’t have to cut into it, it also takes half the time to wash and blow dry now, I saw Proff Rod Hughs last month and he said it can happen but unlike chemo won’t all fall out but will just thin and as you go down on the pred it should get better🤞I use folic acid, biotin and marine collagen and I think it’s helping, my hair tgat is growing back is also very frizzy and a different texture, for me my loosing my hair was really upsetting especially as it seems to be growing like crazy everywhere else🤷‍♀️

[NormaB in reply to Mumdadlove]

Thank you for sharing your experience.

[jarn]

Pred was my worst enemy as well, and hair kept thinning. Soooooo, I just had my hairdresser chop it off and started over!! It grew back thick as ever.

[Nagswoman]

Folic acid. (One of the B vitamins.)

[Rene20]

I have had no issues with hair lose thank goodness Prednisolone is spelt as above!I have noticed many spelling leaving OL out!just ring pernickety!

[DorsetLady PMRGCAuk volunteer in reply to Rene20]

Not a spelling mistake… difference countries/slightly different drug composition

Many countries including US uses Prednisone, the UK uses Prednisolone.

Prednisone must be processed in the liver to produce prednisolone which is the active form of the drug and the dose is exactly the same, a 1:1 equivalent. The only difference is that plain prednisolone is in the system and effective in an hour, prednisone takes a couple of hours to start working.

Which is why many of us just use ‘Pred’.

drugs.com/medical-answers/d...

[Rene20]

Thx for info