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.
This isn't a direct reply, sorry, but another observation or two. Can't say it's at all related to my ongoing usage of pred. I've been taking pred , decreasing dosage as advised to 2.5 grams per day for more than 12 years since I was stuck first with GCA , then a few months later by PMR. With only an occasional flare, and temporary boosts in dosage that was sufficient to manage the associated problems, more or less. I boosted and reduced my dosage as recommended in this forum. Occasionally when I contracted 'flu or other maladies, it seemed to me they may have lingered longer than before GCA and PMR came for their unwelcome and extended visits.
But about five months ago shingles also hit me. I was prescribed a special cream to deal with the associated skin issues and advised to take pain killers for the pain- affecting upper arms and shoulders principally. While they did reduce the pain for a few hours it has recurred and occasionally is as intense as I had with PMR- or a few bouts with muscle spasms earlier on , but is not affecting as many parts of my aging male body ( 84 tomorrow).
What concerns me now however, having had good advice from both our family and Spanish health service doctors (my wife and I reside in the Valencian region which provides good, free medical care although appointments while kept can be delayed for hours inn public clinics- always have good books at hand!), is that I get conflicting advice from online services including interviews with other doctors (German, British) who seem well qualified to comment on the Herpes Zoster virus and its treatment. Here, I was just advised to boost my daily pred dosage to 30 mgs and reduce from that level as possible, the other international doctors suggest avoiding pred, recommending zinc, vitamin D3 and pain killer tablets, plus self administered B12 injections daily, instead. Alas, that hasn't worked very well and I have difficulty with my daily routine and sleeping, plus performing even any light exercises.
Not looking for sympathy but I would be interested if anyone on this forum has had similar experiences with conflicting advice and how they may have dealt with that contradiction.
My other observation is that , rather than losing hair any more than is perhaps normal, I seem to be growing much more body hair- arms and legs especially which has also become much darker- why? .Would that it would also regrow to cover my bald spot!
Regards,
CANUKUS
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!)
At least you resist a comb-over ...
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
same here, had thick blonde hair almost to my waist and it was the most attractive thing about me still at 56...now it's all gone..ordered a wig yesterday. I wore it up so often though anyway, that I try not to let it bother me and it mostly doesn't. I'd rather feel decent than have great hair at this point.
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
Nextoneplease: If I remember correctly she bought it online from an American company. It cost around £200, but was pretty close to her original hair, so she was pleased with it. The only problem we had was that the courier who delivered it put it into our grey wheelie bin on the morning of our fortnightly collection day and didn't bother knocking to see if anyone was in, or leave us a card to say he'd put it in the bin!
Luckily I happened to check how full the bin was as I wheeled it out to the kerb, and found a large cardboard box with my wife's name and address on it, sitting on top of the black rubbish bags. So I took it in to show my wife, as we never put anything into our rubbish bins that has our names or address on it.
She was mystified as to what it was, and opened it to find out who had sent her an unexpected package. It was her wig, neatly folded and packed, complete with usage and care instructions. It had taken around a fortnight for it to arrive from the sellers, so she'd temporarily forgotten about it, but was nicely surprised when she found out what the package was.
Needless to say we were not best pleased that if I hadn't checked the bin, her wig would have been taken directly to landfill by the binmen. Grrrrrrr!!
Anyway, alls well that ends well, and she wore the wig till her own hair began to regrow and thicken out once more.
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.
Thank you for the timely reminder. Even now I can allow myself to be haunted by my mother's disparaging remarks about my hair and appearance when I was young. Thank you for your post.
Sorry if this brings back unpleasant memories. I know too well that mothers can be hypercritical and claim it's for our own good, but I bet there were plenty of others who loved you as you are. xx
My hair has thinned quite a lot since being on prednisone for almost a year. It is interesting though that the regrowth that is happening since I am reducing my dose is dark where it was previously white. 🤞
Not only has my hair become thinner but my eyelashes are practically nonexistent.
I have had the same problem. After about 6 months on 15mg pred my hair started falling out. Two years later I have managed to get down to 9mg and my hair is starting to improve. It's still not back to how it was originally but so much better than it was. Its given me hope that eventually I will have nice hair again.
I lost about half of the volume of my hair last summer (on 8.5 mg of pred then). I decided that it was beyond my control and was looking at cancer patient headscarves, when the hair loss slowed down and now seems to be growing back in (at 6.5 mg pred now). it was upsetting, for sure but I'm not certain that prednisone was all to blame.
My thick hair fell out in clumps after 5 months on prednisone…..it was horrible I had to purchase hair pieces….luckily, it started growing back after one year, it took time but I also took Biotin capsules that helped. I was fortunate enough to only be on prednisone for 3 years. Been off it for 10 months…my hair is back and I’m so thankful Be patient. This disease can be depressing but life throws you curves…hang in there and God bless!
This picture is after 1 washing! More came out!
I am so Thankful to find this site ..I am new on here ..I was diagnosed with GCABack in July 2024. Had a eye stroke left eye ..started experiencing hair loss some months ago ..my beautician can’t get over how my hair has changed..so dry and thing out fast ..trying to get to the bottom of this. I have made a appointment with a endocrinologist next week ..loving with GCA is challenging and scary .. but putting all my Trist in God
I too have lost my thick, long curly hair. I was taking dexamethasone and Actemera infusions. I also was prescribed Methotrexate which I refused to take. Hair loss is devastating and I feel for you. I bought a hair topper from Lauren Ashtyn Collection. I don’t regret it. They helped me pick a color after I uploaded pictures taken outside. My hairdresser cut it and I will wear it daily until mine grows out. (Taking Biotin ). This has helped me deal with the entire issue of my grieving for my hair. It will take a couple of years to grow it back so I felt the money was well spent. You can look them up online and watch videos. I am so sorry and I understand totally what you are going through. I have my eyesight and I dwell on all the positives. I will be praying for your health and for Grace as you walk this journey I care!
It may not be the prednisolone, but rather the PRM auto-immune reaction. I developed alopecia with PRM and my Dr. said it is not uncommon for people with auto-immune diseases to have more than one. Thankfully, the hair in all three the bald patches did come back. My dermatologist treated them with steroid injections to the scalp. Still have some general thinning around the face, but less hair loss when my PMR is managed well with prednisone.
I find that I lose hair when I am having a flare. So for me, the solution is often to go up 1/2 or 1 mg of prednisone to get over the flare and stop the hair loss. In addition, if a bald patch develops, treatment with steroid injection as well. The injection stimulates the hair follicles and is only slightly uncomfortable.
Good luck.
I was diagnosed with GCA in March 2024. I had thick wavy hair. But during the GCA journey I lost about 65% of it. My scalp showed in the back and the remaining hair looked like a steel wool pad, parched and brittle. I saw a dermatologist who diagnosed it as telogen effluviam, a condition brought on by the shock to the body of illness or sometimes surgery. A number of people with covid got it. It affects the hair shedding cycle and causes major hair loss. He recommended using minoxidil, which I am doing. The good news is the shedding does eventually subside and the hair grows back, but not it's always the same. Mine is curlier and still not as healthy looking as it was, but seems to keep improving. For me, along with the other losses incurred by the illness, hair loss was one step too far! But take heart! It does improve over time. Yet another opportunity to practice patience. Ugh!!!
I have always cut and styled my own hair and never had much trouble until I started taking Pred, almost immediately it started falling out to the pain of almost blocking up the vacuum cleaner. My saviour has been a bottle of BIOTIN tablets. It’s almost completely stopped shedding now and in good condition.
Good luck, oh and bye the way you’re not being vain just taking care of yourself. XX
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