Hair loss

[Harry8388]

I have wrote this several times but never able to find any replies

My hair is so thin and looks like a Brillo pad is this the steroids

[DorsetLady PMRGCAuk volunteer]

Just go to your profile - and you’ll see previous posts -

healthunlocked.com/user/Har...

Have you selected to receive notifications when someone replies to your posts?

[HeronNS in reply to DorsetLady]

If they don't know how to find the replies I don't think they'll see this. I've sent a private message although that may be just as futile. Is there any other way to get help for them to access the posts?

[Rugger in reply to HeronNS]

Harry8388 replied to Mumdadlove 2 days ago, so they might be seeing all these replies!

[HeronNS in reply to Rugger]

Oh good. I hadn't noticed that, looking very quickly quite late in the evening.

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

If they can write a post, then they can access the forum… and then they can contact the help centre. As PMRpro and I say very often, there is nothing we can DO other than advise, we are only users, not techies….

[nallufl24]

It is definitely the steroids. My hair was something everyone complimented me on all my life. After a few months of prednisone my hair was coming out in clumps. I too described it as a Brillo pad. What was left was dry and brittle. When I got to 10 mg pred it stopped falling out but still had no life. It was just there. Eventually it grew back even thicker than it was before.

[YogaJM in reply to nallufl24]

Glad to hear that your hair grew back again well. Mine has thinned a lot, but around 8 to 8.5mgs Prednisolone, it appears to have stopped falling out. Now hoping to see some regrowth.

[Gossiplady in reply to nallufl24]

that is good news. My hair was pure delight to me and so many compliments! In those days I was coloured blonde but with Predisolone hair fell out, broke off and is awful. So down to chopped off leaving me looking like a badger. Dreadful. One day I will return!

[PMRpro Ambassador]

Sometimes hair falling out soon after diagnosis is the illness itself, it can take up to 6 months for it to show, But pred can cause some hair loss and change in texture too.

[piglette]

My hair changed out of recognition from straight, greasy, shoulder length hair to a sort of brittle, dry haystack.

[Daffodilia]

My hair got thin when started high dose of pred but back now on lower dose

[Mumdadlove]

My hair was my pride and joy, always complimented on it, have been in prednisone 7 months and had notice a change in the texture a couple of months ago, then about 6 weeks ago it started to fall out, not clumps but on hairbrush, and finding it everywhere, I’ve had to have it cut into a shorter style, I’m using marine collagen, vit B, folic acid and a shampoo for hair loss, for the first time ever my hairdresser didn’t have to chop into my hair, I’ve got a bit of re growth but it’s curly and frizzy, I’m just down to 12.5mg so I’m hoping as I get lower it will improve

The crazy thing is I’m sprouting it everywhere else, even low down on my forehead, cheeks, neck, have to do a weekly hair removal, what I don’t get is how do the steroids know the difference from head hair and body hair

Good luck all really hope that lower doses help with all these horrible side effects, I get the seriousness of the illnesses but the side effects are awful, the one thing I’ve not had(as far as I’m aware) is mood swings, but this with my hair has really upset me and made me feel low, so many body and face changes almost makes me want to hide away, in 7 months I just don’t feel like me and still a long way to go

Good luck all

[Harry8388 in reply to Mumdadlove]

you have relayed my feelings exactly

The side effects are really awful and I felt that no-one understood

Thank you

[Broseley]

I always had thick wavy hair. Now it's thin, curly and fly away. I can brush it, but within a few minutes it looks unbrushed again. It also falls out everywhere, including in food I'm cooking. Very embarrassing if we have guests!

[S4ndy]

Yes, it's the steroids! My long straight hair started to fall out when I was on high doses. When it grew back it was course and curly, very brillo pad like All the course hairs seem to be greys too. Getting used to it now though

[RT18]

my mums hair stayed the same - apart from the top right which went all frizzy - as opposed to the rest which was straight and limp. Most bizarre - a year on still the same - 2 hair types on the same head!!!

[PMRpro Ambassador in reply to RT18]

I have that - the crown hair is smooth waves of the 1940 variety, the ends are starting to form ringlet type curls now, But the nape hair is beginning to form tight ringlets after just being frizzy until now. I assume it needs the weight to smoothe it out.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

. I assume it needs the weight to smoothe it out.

yes it does, from one curly top to another 🤦‍♀️

[Artsister]

My hair got very thin and frizzy on prednisone. It came out very easily when I brushed it.

I have been off of prednisone for over a year and my hair still is thin and comes out easily! ☹️

[Saffron23]

I have had the same problem, always had thick good condition hair until starting steroids, after about 6 months my hair became thin, dull and frizzy.

Have hope, since being on a lower dose of 7.5mg pred I have noticed my hair is improving. I also been regularly taking folic acid too and I do think that has made a positive difference also.

[GML19 in reply to Saffron23]

I so not know whether it was Prednisolone or Methotrexate, but I lost most of my hair: it wasn’t a good look with my moon face! Now face back to normal and hair has grown back thickly. I hadn’t really thought it looked like a Brillo pad, but it is dry and very curly: not long enough for ringlets. My skin is very wrinkled and dry. I look years older. Has anyone any advice on skin care? Sorry to be so vain.

[Gimme in reply to GML19]

It's not vanity. It's bad enough being ill, without it affecting our looks aswell. It would knock anyone's confidence. A little bit of self care is good for your self esteem.

[Karendeena]

Yep, lost shed loads of my beautiful thick hair, now it breaks, it's dull and dry 😞

[Bluey-1 in reply to Karendeena]

Mine has become thinner, definitely dull and dry. I only wash it weekly now. I’ve tried various shampoos, pre hair oils which help a bit and get regular trims but it’s not what it was. It feels a bit better on lower doses of pred but whether it will ever recover who knows?

[Karendeena in reply to Bluey-1]

I am only on 1.5mg daily but it hasn't improved 😞Champo (available only in Harrods or online) has made some improvement

[Bluey-1 in reply to Karendeena]

Oh dear, I won’t get too excited thinking it’ll get better. I’m on 6mg so some way to go. I’ve tried Vo5 hot hair oil, Olaplex and it looks good when I’ve left the hairdresser’s. It’s better some days than others, a bit like the GCA experience! Will look at Champo.

[Allotmental]

I have found that not washing my hair really helps. The natural oils kick in and seem to keep everything in balance. I know this sounds really ugh!, but genuinely it is not itchy or scratchy after about the first week, and it is not smelly at all. The only thing I have done is kept my hair shorter, I am not sure it would be so effective for longer length hair.

The only other thing I can think of it that it might be worth taking folic acid? My hair loss/dryness was I think caused more by methotrexate rather than the steroids and so upping my folic acid to 4/5 days a week certainly reduced the hair drop.

[PMRpro Ambassador in reply to Allotmental]

It does work with longer hair - without curls it would be shoulder length. I usually wash it about once a month. I wet it daily rather than spending a fortune on styling products - I hate the feel of them on my hair anyway - and that brings back the curls after they resented being lain on!

[Mojo63]

Having started with GCA in 2011 I use Plantum 39 green bottle shampoo and conditioner, quite expensive so I usually buy at Boots buy one get one free! I have recommended this to loads of people and they say it has improved their hair. The thing I would say the conditioner seems very thin but it does the trick. My daughter is a hairdresser and loads of brushing will not help you hair. Not washing it so much will help. Hope this

[whitefishbay]

My hair went all dry and mad too but it went away as I lowered the dose. Don't waste money on super fancy shampoo. Conditioner helps a bit. This too shall pass.

[HeaUnlocked]

I had hair loss too, but mine didn't start until I was weaning off the prednisone. Didn't lose any hair when I was on higher dose, only started to lose it when I was down to about 7 or 5m and continued to lose it for a while even after I weaned off pred completely.

It is very strange. Acc to the research I did some ppl don't experience hair loss at all, some experience when they're on the highest dose and stop losing it at lower doses, and some (like me) don't lose it until they start weaning off pred. Weird

Finally my hair is back to about normal, but it took a long time.