Hair loss… is this normal?

[Richmond162]

Hi. Am now down to 12.5 pred from 40mg as diagnosed with pmr but also GCA this year. Apart from putting on weight and feeling that I can move muscles better I now notice when brushing my hair it is coming out a lot in the hairbrush! I am so worried now that I will lose my hair. Is this normal with steroids and also if it is, will it grow back. I’m devasted at the moment. Really thought I was doing ok. Thanks for any advice given.

[DorsetLady PMRGCAuk volunteer]

There’s lots of posts on this subject - maybe start with this one -and then also look at related posts -healthunlocked.com/pmrgcauk...

[Richmond162 in reply to DorsetLady]

Many thanks.

[jaycee444 in reply to Richmond162]

It will grow back. Same thing happened to me but after many worrying months and visible thinness it started to regrow. Strange thing was than the new growth was curly and two years later this is still happening. I expect at some point it will end up straight again but for the moment I am enjoying it.. The main thing for me was that I didn’t end up with bald patches just definitely diffuse loss. Hope the same applies for you.

[Richmond162 in reply to jaycee444]

Thank you. for giving me hope 😊

[piglette]

Steroids had a bad effect on my hair, but I think Methotrexate can be even worse from what people say. Do you take Methotrexate?

[Richmond162 in reply to piglette]

Hi. Only steroids and of course a stomach protector tablet and adcal. thanks.

[PMRpro Ambassador in reply to Richmond162]

PPIs can cause hair loss ...

[PMRpro Ambassador]

If you were diagnosed with GCA this year it could be due to that - our hair often reflects our health or lack of it and GCA is a serious systemic illness. And it is common for it to take a few months before it is noticeable.

[SnazzyD]

My advice - Start a very low carb diet now and be ready for anything. As your body grapples with ill health and then steroids it can do anything. My edited highlights are, lush, nearly bald (at 5 months), grew back quickly, rather nice, mad scientist, ok, very sparse (adrenal insufficiency), mad scientist, ok, lovely mane, and so on.

[Viveka in reply to SnazzyD]

Lovely description of pred hair cycle😀

[Grammy80]

Take heart Richmond!! I was dx with GCA 3 years ago and am now on 8 mg per day plus TCZ. I had rather straight heavy hair, then thinner, then coarse and wiry curly (kind of liked that) and now it is thinner than before but soft and wavy. It never got so thin I couldn't fluff it up.....take care, you are doing OK~!💕💕

[Richmond162 in reply to Grammy80]

thank you for words of encouragement! I’ve always had thick wavy hair and it seems to be getting finer along with loss. I will take heart! 🥰

[agingfeminist]

80% of hair on my head has gone(also hair everywhere else 100% gone)...now at 3.5mg and no sign of regrowth. I am going to recommend (again) long bright cotton scarves tied in a turban. Once you start wearing them you soon forget about the non-hair issue. (you can get them from kettlewell colours and even buy a shirt to match! )

[Richmond162 in reply to agingfeminist]

oh dear fingers crossed it will eventually grow back, have made note re scarves. thank you

[Viveka]

Mine came out at higher levels and came back quite quickly. Less silky and less curl but ok when styled. Most people seem to find their hair grows back. X

[Broseley]

I'm the same diagnosis and treatment as you, since last September. My hair was falling out for a few years pre diagnosis. I was told it was post menopausal. After starting 40mg pred it stopped falling out and grew back thick and lush. After tapering to 15mg it started falling out again big time. My hairs get everywhere. In my food, down my bra, all over the bathroom floor and even in my toothbrush! It has gone fine and frizzy and I feel like Bill Bailey. No bald patches though, so it seems to be an even loss. Fingers crossed for us both!

[Richmond162 in reply to Broseley]

oh yes, same here hair on toothbrush too! thank you

[Scoutky]

I had similar experience with hair loss after being on 40 mg of pred (also have PMR) and being reduced downward. Now on 2 mg daily. Hair loss stopped, got fuller again and now is extremely curly! I cut it shorter than the mid back length I had and the curls just bounce. I love it! Don't know if it will stay that way once I am off the pred, but I am enjoying it now :o)

[Richmond162 in reply to Scoutky]

thank you

[Richmond162 in reply to Scoutky]

thank you

[LemonZest11]

Hi Richmond, hair thinning is definitely a post-menopausal thing for many women, me included, however the higher doses of pred (or it might just have been the disease), caused my hair to thin noticeably, well to me anyway. Now on lower doses and disease under control for now, and my hair has definitely thickened up. I’m sure your thinning is temporary, although very distressing while it’s happening. 🤞 that it will turn around with time.

[Richmond162 in reply to LemonZest11]

Thank you for cheering me up!

[MarksPoint]

Sadly it seems quite a lot of us suffer from hair loss....I am in a similar place to you, started on 60mg Pred Dec 2021 and now down to 6mg. My hair started falling out about 3 months ago and I have lost heaps, about 70% I would say. I am really devastated too. Also the texture has completely changed , what's left is like candy floss, absolutely horrible. Still, there is nothing we can do about it except accept it and try to get on with things. This site is my tower of strength, hang in there and hopefully we will both be OK in a few months time. x😘

[Richmond162 in reply to MarksPoint]

Yes mine is fluffy and mine was quite thick and coarse. Yes, I suppose we must accept it, but upsetting. Take care and thanks for replying.