Good morning everyone
This is sheer vanity. I am who I am and this is me. However since being on Prednisolone for nearly 6 months my lovely curly hair has gone all thin and shows patches of bare scalp 😞Am I right in thinking this could be steroid induced and could improve over time, or aging and I'm going bald 😧
G.
Don’t down grade this issue to yourself! It is important and something (please!) we should have untouched, but no. The causes are numerous so Pred isn’t the only culprit. It is a common, often delayed, side effect in those with a systemic upset. Mine nearly all felt out 5 months after GCA diagnosis after the first 3 months on Pred gave me superb hair. I don’t think the body likes having the goalposts change on a regular basis. There are other things like thyroid problems, Methotrexate, stress, low adrenal function at the end etc etc.
Through my journey my hair went through various stages so an open mind is key along with keeping the faith that things level out eventually. Personally I didn’t bother with lotions and potions but some do.
Partly Pred and partly being unwell.
You’ve got one related post -but if you’d put hair in the title you’d have hit more -unfortunately it’s common talked about on here.
See this from FAQs -contains advice, and hopefully reassurance
healthunlocked.com/pmrgcauk...
..and more in this -
healthunlocked.com/pmrgcauk...
Thank you I have found related posts 🙂
My glossy, straight hair turned into a dry, crackly haystack. I tried everything, it cost me a fortune. As I reduced, it did get better. My hairdresser was very supportive, but did not have any good ideas either! It has now improved dramatically, but it has stayed curly though.
Pre-PMR I had a mane of glossy, bouncy, beautiful, naturally wavy hair that, depending on how they looked at it, was my hairdresser's dream or nightmare! It has to be cut right, no persuading it into a blow-dry. One guy said "thank goodness not all my customers are like you!" another had the cut and comb through down to an art on 20 mins. - the worst thing about moving here was leaving him!!
But with PMR it became dry and the natural bounce and wave disappeared. I was able to switch to a bob and use straighteners and blow dry successfully for the first time in my life. Then after 5 years I started pred - and it turned frizzy and went nuts. Since starting Actemra and getting the pred dose down to 7mg it is slowly returning to more like it used to be. The top hair is smooth and more manageable than it was. But the changes take time to be seen.
I have to have the right hairdresser who won't try to make it do what they want - that is a waste of money and I leave them if they don't listen. I wash it about once a month, sometimes less often. I still haven't found a shampoo that is really successful but by leaving it between it calms down. But I get compliments about it again - it WILL get better, so be patient.
I love the way you paint pictures with words. I can 'see' what you describe in my minds eye. Thank you for sharing. Fortunately I have had the same hairdresser for 21 years and she knows my hair which, like you describe, won't be told what to do.I don't mind being silver grey but I don't fancy bald patches 😒
Is it forming bald patches? Mine has only ever shed fairly evenly. If you are developing discrete bald areas, it is worth speaking to your doctors in case it is an autoimmune alopaecia.
Thanks, yes, a bit. My hair is curly and the curls hide up the bald bits but when it is wet or I am brushing I can see them. It comes out a lot in the brush
We all need to remember that it’s the person that’s INSIDE that matters! And there are some BEAUTIFUL people on this forum! (My hair has gone so thin and absent on top that I use a trimmer very short all over - or it looks ridiculous - I look back longingly at at wild mane of shoulder-length hair I had in the 70’s!)
I do sympathise Groggrim 🤗I have shed many a tear over my hair. I’m not generally interested in my appearance but my hair used to be thick, blonde and the best thing about the way I looked.
Now.. … it’s thin, breaks easily and is developing bald patches, especially at the front (‘male pattern baldness’??) I have found specialist hairdressers and even wig shops online but I don’t want to spend the money! So I’m concentrating on wearing make up and scarves and hoping things may improve over time 🤞
Good luck and hugs to you 🤗 x
Bless you. Thank you for your post x
Thank you so much x
Mine did shed all over but I certainly ended up with a few balding patches. Luckily new growth was already coming through albeit very thin and wispy and so it never got to a stage where it was noticeable to many people. For some reason the new growth was curly ….always had straight hair before. My hair now is certainly not as thick as it used to be but I am not now shedding in the same way.
As soon as I started on prednisone, (over three years ago), my rheumatologist advised I start on some supplements (calcium, Vitamin D and K, B complex and folic acid.) The folic acid is for hair health, apparently, and I don't know if it would have been any different without it, but I haven't noticed any changes to my hair over these years with prednisone. Worth a try? Can't hurt.
I always had poker straight hair cut into a bob. After several months of prednisone my hair became wavy with little curls. I’ve had the same hairdresser for 20+ years and she cut it shorter with layers.
I’ve had a hearing aid for 10 years and my AMD (macular degeneration) has become worse, I cannot drive any longer.
But hey ho I can walk everywhere, and I’m feeling great as my hairdresser gave me a pink tinge last time I had it coloured.
🌹
Love your positive attitude Tinasleepyhead 😊
I too can’t drive due to worsening AMD and have had hearing aids since last year. Unfortunately my mobility is poor too but I’m gradually working on that!
Basically I just find the hair loss is the straw that breaks the camel’s back…. X
during the pmr journey ...5 years so far...my hair comes and goes. Tried the odd magic potion...all useless...now use Johnson's baby shampoo. I also use head scarves when it it gets more noticeable. I have the advantage of never cared about my hair (it was easy) and have never been to a hairdresser...just snip it when needed.
I'm afraid it is rather unpredicatable what might happen...scarves or a wig might be the answer for the worst of times.
I’ve been thinking I may have to start looking at wigs! My hair has got so thin and there is a patch where you can see my scalp.I am on 1mg and am 86…… hardly likely to improve when I eventually stop taking pred?!? Or might it?
I found hair came back as reduced pred - good luck
Oh dear. With all the problems that PMR causes, the last thing you need is bad hair! But it cannot just be due to prednisolone; I was on it for 29 months and I still have a full head of hair that comes down onto my shoulders (and I'm a 68-year old bloke).
My hair used to be so thick and wavy that it once took a hair dresser 3 hours to blow dry. But it started thinning long before PMR, probably after the menopause. I used to have it in a long bob but in the last few years it has thinned so much at the front that I called it my Bill Bailey hair (like the comedian's wispy hair that flies up in the slightest breeze). It is thicker and quite curly at the back.
After experimenting with various products I finally found the best combination: Head and Shoulders Supreme Moisture shampoo, followed by The Cornish Seaweed Bath Co. Super Nutrient conditioner which I combine with 6 squirts of Elvive Extraordinary Oil Miracle Hair Perfector for dry hair. The instructions say 3 to 4 drops but I need more for my very dry hair. I finger comb it through my wet hair in the shower, wash my body then rinse it out. I wash no more than once a week. It's now tamed - to a much greater extent.
Thanks. One more thing.. I can’t find in frequently asked questions?!?! .. anyone suffer from itching skin? Legs particularly.?????
I'm sure I've read posts on here about that. Probably best to do a new post then it will come up in linked posts.
Itchy skin is often asked about. As Broseley says - ask in a new post.
YES!! Especially at night around ankles and feet. I've been using Eurax Gel recently, that helps. Have tried others but this suits me because the gel is cooling.
Thank you for all your comments. Menopause 💡Why didn't I think of that 🙄
.Hi, I had some hair loss on higher doses but it has grown back and I now have curly hair when it has always been straight. I'm on 5mg at the moment
I have been using BetterMe oral spray Hair, Skin and Nails Oral Spray for a while and it has helped with all 3 slowly over time. It has the added advantage of not reaching your stomach where it can argue with and lose against prednisolone,
Remember to stop it for a day or two before blood tests - it contains biotin which can interfere with some tests!
Where to get? Any chemist? Or online?
Holland and Barret do but there is a BetterMe store online where you can set up regular subscription and get a discount. In fact I max out supplements through them as the less that gets to my stomach to argue with meds the happier I am.
I lost a lot of my lovely thick hair especially at the front during my time on prednisolone, unfortunately it never recovered and I have been off it for a year now
in the early months of diagnosis my hair went very thin. I was recommended Nioxin shampoo and conditioner by my hairdresser and this seemed to work. I also started taking biotin and collagen around the same time so one of them, or the full combo, meant that my hair eventually thickened out and has kept in pretty good condition ever since. I have heard that it can be a bit of a "hair condition" rollercoaster on lower doses. I take AdCal D3 (and Vit K to assist absorption) as most PMR patients do, though I'm not sure if that helps with hair loss. Keeping hydrated was another thing my hairdresser recommended. I hope you find something that helps.
totally sympathise… used to have abundant wavy locks and then at all fell out about 5 months after diagnosis and starting Pred etc. A ball of tumbleweed in my hairbrush every morning and all sink plugs blocked! It s slowly returned - in a different guise. Can be blow dried to look fairly ok but still have to tame the frizz if left to dry naturally . I don’t know about patches as, like PMR pro, mine felt out fairly evenly. But dont despair, it seems this is true for most of us and generally things get better. Sending you all good wishes,
Hi, I use hair toppers. They clip on and I told that they look very natural
I think it must be something to do with the pred, now I am on 7mg it has stopped falling out and is even growing back a bit. Very wispy bits along the top but every hair is welcome and I tell myself that now it's frizzy it looks like I have more body to my hair 😊
I really wouldn't downplay the knock-on effect that illness has on our appearance and in our overall sense of well being. It's not vanity, at all. So don't beat yourself up about that one. Having nice hair makes us feel good, so your question is every bit as valid as any other.
I put my hair loss down to the 3 weeks that I took alendronic acid at the beginning of taking pred. I stopped because my stomach didn't like AA. AA has hair loss listed as a side effect, but I believe that pred can cause thinning too.
For the first 6 months on pred, I had no issues with my hair, but then it suddenly went weak and brittle and I was shedding hair like no tomorrow. It got very thin. The breakage and regrowth points would coincide exactly with me starting pred (and AA). My previously poker straight glossy hair went overnight to a brillo pad frizz and was impossible to style. I was really miserable about it. I had my long hair cut much shorter to jaw level, at the prompting of my hairdresser, and started using super moisturising conditioners, which I leave in for much longer than I used to and am more generous in the amount to make sure that my hair gets well moisturised. The shedding stopped as soon as I had it cut shorter and it gradually grew back and a year later, it looks healthy again. And once I got the frizz under control with a good conditioner, I found that my once straight hair is now curly. I have found that the conditioners that contain actual coconut oils have worked the best for me and I have tried several. The herbal essence one has been particularly good at taming the frizz.
My missus lost a lot of hair about 6 months after we both had Covid. It got so bad she bought a wig to wear for work. However, a year later her hair was more or less back to normal, and she's now retired, so she doesn't wear the wig any more, but she'll keep it just in case her hair thins again.
She found a wig that was very similar in colour and style to her own hair, so her colleagues didn't even notice. They just thought she'd had her hair done in a slightly different style.
Hi MiniSpec
Glad your wife found a solution 😊 Can I ask how/where she such a good wig? Thanks x
This is something I'm sure we can all sympathise with. From hair problems to pred making our faces look like hamsters, it's surprising we don't all just hide under a blanket. It will improve, even if it's never the same as before. As Snazzy D says, there's usually something other than pred causing it. (My "crowning glory" became less "glorious" with hypothyroidism, then just gave up trying to resemble human hair when pred came along) Concentrate on getting your whole self as well as possible. Those who love us love us for who we are, not what our hair looks like. My husband never mentioned how awful I looked when it was at its worse, but did comment recently how good it is to see my hair looking thicker and shiny again. I know there's no magic cure, but now mine is growing back I've found Pantene Bond Repair makes it more like hair and less like a brillo pad! Good luck.
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