I’ve been on pred for 8 months for GCA- started on 60mg and now on 9mg. I get the awful thinned skinned bruising all the time, but I have also lost so much hair. I have always had thick hair but it’s now horrendously thin. Is this a common side effect of steroids ?
Plus is there anything I can do and when I come off the steroids will my hair grow back in again?
I started getting hair loss about 3 months after starting pred. It just seemed to fall out more easily and often than usual. I asked myy hairdresser for advice and was advised to try and wash it less often. This has worked a bit for me and the hair loss has slowed down. I am sure as soon as the uk wakes up you will get responses from people who have started on high doses of pred like yourself and their advice. YBB
Thank you. Good to hear that the hair loss slowed down. If mine doesn’t considerably I’ll end up bald!
I only wash my hair once a week now. When it is wet it feels like a matted mess! How often do you wash yours?
I try for once a wek but occasionally have to do twice. No matter what shampoo i use my hair just never feels completely clean. If yours doesnt get greasy you could try even longer between may be 10 days. Good luck.x
Your GP can prescribe Folic Acid. It does help.
Thanks Jinasc. How much folic acid should we take?
Haven't a clue................some one else might know, but your GP will definitely know.
I never had that problem when I had GCA.
If I remember correctly, patients on cancer medication and also methotextrate (which is what it was made for) get Folic Acid automatically. As I have never taken Metho....... I will leave that to others.
There are also some type of shampoos that help thinning hair to look thicker. However you need to check it out with a very good hairdresser. My hairdresser of over 30 years also teaches at the Technical College.
Hi GracieSimp, I have been on pred for a year now for GCA, started on 60 mg and only down to 12.5... congratulations for getting to 10 mg in 9 months - that's wonderful. I used to have long thick blonde hair and I would say I have lost 60% now. I take folic acid every day (but only for the last 4 months as want told about hair loss as a side affect) My nails have got very strong but so far the hair loss doesn't seem to have slowed down - I have started taking Biotin as a recommendation from this forum and hoping that will help. I find it pretty upsetting. I dyed it a slightly darker blonde/brown to make it look thicker lol. It worked a bit but I dont feel like a brunette lol. 
. If you receive any more tips please let me know - its always good to share. Keep on your wonderful route, you are doing really well. Best wishes FOD
I started on 40mg & am now down to 8.5
I'm pleased to report that my hair loss seems to have stopped. Now it just won't grow!
Funilly enough my hair stopped growing when I was tapering but now on 1gm started growing like mad and have had a terrible thing happen with a post operated cataract removal as scar tissue has covered the capsule and am waiting for an operation to remove it, wonder if it is related?
Do you mean posterior capsule opacity? It is a common post-op effect.
allaboutvision.com/conditio...
Thank you for your reply, yes but mine is the worst they have ever seen andthe operation needed is like a vitrectomy. I didn't want any more done as I had a job getting over the 2 cataract operations. Wish me luck. BERYLHOLLEY
Oh I do wish you all the best - but not luck, a good surgeon is much more use than luck!
Thanks I will keep you informed.
I stopped taking alendronic acid and my hair grew back to normal. This was a year ago and as Rheumy cancelled my 6 monthly appointments they don't know yet. Seeing Rheumy on Monday and expect they won't be pleased. But I can't recommend it . it is my choice to risk bones
Hello, about 5 months in to GCA mine nearly all fell out in the space of a week after first being much thicker on Pred; it fell out in clumps. It grew back over the next 4-5 months but then did it again a year or so later but to a lesser extent. The second time I was most miffed because by that time I was on only10mg. It took nearly a year to come back properly and I looked like a mad scientist for months. However, throughout its worst the second time I was having proper adrenal problems. I have noticed over years of nursing that after acute systemic illness people do tend to shed something like skin or hair in a delayed fashion, so I don’t think it is all Pred’s fault.
Mine has gone very wavy and a bit frizzy at the sides. I noticed I lost some hair when I first started pred but like others I stopped washing it so often- now every 2/ 3 weeks. I know that sounds gross after being someone who would a lot of the time wash my hair every other day. The only thing I can say is that it has helped my hair loss, it doesn’t look greasy in fact is too dry in places, and the condition of my hair, apart from a little at the front at both sides is better. I have also stopped using my hair straightener and have gone for the natural wavy look which I now like.
Thanks / can’t imagine not washing my hair for 3 weeks. But interesting.
I usually go 2 weeks, sometimes 3 weeks. It is something you have to build up to - going longer and longer between washes, Once your body realises you aren;t removing all its natural oils that keep it healthy it stops producing so much and it doesn't get greasy.
It is possible some of your hair loss has also been due to the GCA and not just the pred. Poor health is often reflected in our hair - but it isn't apparent for a few months after the illness.
Mine was fine on prednisolone and now on prednisone but in between I was on methyl prednislone and my hair went mad! It was frizzy like a soap pad and fell out a lot. But within a few months of switching to prednisone it started to improve again. I still seem to lose a lot but it also grows well. Or maybe the hair looks a lot because I should clean more ...
Biotin helped me, pre/PMR/pred as well as since.
Hi there, I too have been losing more and more hair, been in pred since Oct last year. Got a shampoo from Amazon but can't say I've noticed much improvement as yet have only used it three times. Like others, I now try to wash my hair once a week, resist using my straighteners, and tie it back more. A friend of mine is trying lavender oil mixed in with her shampoo, and says it is helping. I've since bought some but not tried it yet. Will let you know if it works for me.
Gracie,
I was terrified when my thick long hair started falling out like little birds nests. I've gone from 80 mg to 15 mg pred three different times. It was really bad the winter they paired it with cyclosomething. A prednisone sparing drug. Anyway, for me, it always fills back in when I get low enough on prednisone. I'm sure yours will too.
Taking prednisone is such a terrible shock to the body. Also, I take vitamin b and d. One of those made my hair and nails improve drastically.
Good luck to you. I know its jarring, but give it a little time.
Jessi
I lost lots and lots of my thick thick hair... but at about 4mg. it stopped. I think it is growing slowly back. But it is fine this way. thinner but easier to manage. it does stop. I never took AA. so I definitely think it is from the prednisone.
That's reassuring - I will be - fingers crossed - on 4 mg by Nov - so hope things then improve. Thanks.
I was quite horrified when my hair started falling out. My hair was extremely thick when I was young. It had already thinned out quite a bit when my PMR started at age 72. Then the PMR/prednisone caused so much hair loss that parts of my scalp showed.
I have finally been able to reduce to 5 mg of pred and amazingly my hair is coming back. It's not thick, but it looks a lot better and fully covers my head. It's still very baby-fine when it used to be sort of coarse, but I'm not complaining. I'm hoping it will continue to improve as I slowly reduce my pred.
Good to hear. I’m on 8 mg now so hope soon I will improve like you. Thanks.
Good luck! I was stuck at 8/9/10 mg of pred for several years and I'd almost given up on getting my hair back. So it's such a pleasant surprise that I'm finally improving. Best wishes to you.
Started on 45mg Pred. for GCA and my fine hair fell out so that it looked awful with thinning at the front and on the crown. As I reduced the thinning slowed but the condition was poor , dry scalp that itched and very dry blow away hair. At about 7mg I read about Biotin on the forum and now after 3 months the difference is plain to see. I've had it cut short, shampoo it about every 10 days and rub my scalp with Baby oil 30 minutes before washing. I also massage my scalp gently to aid blood flow. I used to colour it but now I leave it to be a lovely steel grey with fashionable white highlights.
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