I am at 8.5 mg of prednisone after starting on 20 mg on September 2023.
I have lost half the volume of my hair. (gauged by the thickness of my pony tail now and the fact that barrettes and elastics used previously just fall out now)
Has anyone else experienced this and is there anything that can be done to slow the hair loss down?
Plenty of related posts to view and this from FAQs -
healthunlocked.com/pmrgcauk...
..and this post from earlier today -
As we frequently point out - serious systemic illness can have a great effect on the hair, I had 5 years of PMR and no pred - my hair was shedding right royally! It often is noticeable about 6 months after the illness starts. Some people people find pred affects their hair and it also depends a bit what other medication you are taking - others affect hair too.
I’ve seen lots of people suffer systemic shock and lose hair, often delayed, and I was no exception. Five months after my GCA diagnosis it fell out in clumps until I had patches of bare scalp. It grew back but went through various phases between pretty good to comical over the next few years. I had another big shedding after a period of very low adrenal function and it recovered again. So it can be a bit unpredictable,
May I ask you how you recovered a higher adrenal function? I have been losing my hair for quite a while now but it’s getting much worse now. Am on 5 mg prednisolone ‘for ever’ according to my rheumatologist. I feel incredibly exhausted and out of sorts and think it might be because of an adrenal problem.
Sticking with feeling rubbish for months and months until my body decided to work. It is a fine line between staying low Pred in order for the ‘too low!’message to get through and getting an adrenal crisis. After 5mg I decided to reduce by 0.5mg over a period of 8-14 weeks and played my part by not putting too much stress on my body. Domestic life was difficult with an elderly relative so that took all of my bandwidth. Other than that I didn’t do much else apart from walk the dogs every day. It felt like I would never be the same again but gradually the good hours turned into days and the days into a cluster of days etc. I was a year on 1mg and below and it took another 18 months after I stopped Pred to feel I was probably 99%better with the odd crisis during unusual events.
I had a Synacthen test at 4mg and 1.5mg and the results were distinctly lacklustre and not half bad respectively. I find it interesting the difference in the point where Endo’s decide it is steroids for life, apart from when there is minimal or no activity which is dangerous. It can take a bloomin long time for some of us.
Has your doc checked your thyroid, B vitamins?
Pleased you are feeling better now. Unfortunately I have multiple immunosuppressive illnesses. hypothyroidism post thyroidectomy, rheumatoid arthritis, Sjogren’s, uveitis in left eye (with epiretinal membrane complication), Raynauld’s, osteoporosis, etc. I have taken steroids for a long time when I was first diagnosed with RA (in 1986) then I came off them but was put on prednisone again in 2018 following my second knee replacement operation be the pain, while recovering, was extreme. I have never been able to stop the steroids since then. My rheumatologist did say I would remain on them for ever without doing or suggesting any tests. I last spoke to my GP a month ago about checking my adrenal function, she agreed but when I went for my blood test appointment there wasn’t a request for cortisol levels! Why don’t they listen to patients? It’s infuriating. So will have to request this once more. Meanwhile I feel terrible. Always exhausted, needing to sleep so much… it’s scary. You mentioned getting close to having an adrenal crisis (if if understood correctly?), if so what were your symptoms? It seems one cannot get the help one needs from doctors.
I request thyroid tests regularly to send to the decent endocrinologist who agreed that I needed Liothyronine in combination with levothyroxine after many years of feeling below par and fitting for a correct treatment. My surgery refused to prescribe Liothyronine because of cost… so much for looking after the patients’ wellbeing. Thank goodness I went privately to consult the endocrinologist who couldn’t understand why I was not already prescribed Liothyronine since I haven’t had a thyroid gland since 1980! He was shocked and prescribed it on the NHS as it is essential.
I have had my vitamins B12, D tested. It’s fine. My vitamin D is high because I have been supplementing with VitD and vitK2MK7 and Magnesium since February. I inject B12 because of B12 deficiency and low absorption problems (on omeprazole for decades!). Yet, again I had to fight to be prescribed B12 ampoules. One wonders whether doctors think it’s ignoring patients’ needs, especially if they’re past 65 and had serious health conditions…
Sorry, I neglected to look back at your bio. In a rush!
As for being close to a crisis, my experience has been the usual symptoms such as deep deep fatigue, diarrhoea, abdominal cramps and weakness. It can feel like low blood sugar but it doesn’t help. For me there is a particular ‘flavour’ to the fatigue which is an emptiness and when it goes into a crisis I just know I’m in serious trouble. It’s not a fear it’s a knowing where my brain just goes into another state when the body is in peril. There’s also nothing I can do about it by that point other than get some steroid in. IV hydrocortisone was like having life poured back in. I didn’t bounce back like nothing happened as I had Covid but I was no longer at death’s door.
Thank you for replying. That’s scary. When I wake up from a long deep sleep it feels like my brain is sluggish, struggling… the symptoms you have described are similar to what I experience. Must, again, make the GP do her job! Am fed up of doing so. So who do you consult to be taken seriously and supported during the crises?
The trouble with having low adrenal function is that the symptoms are not specific, especially when there is a lot going on with other physical issues. I do remember not being to wake easily in the mornings after a lifetime of being morning lark.
To add to those who make the point about systemic illness, there is no doubt in my mind that prednisolone in higher doses does cause hair loss. It messes with your sex hormones, and I also noted a slight moustache. However, the hair should start to improve when you get to lower levels of pred. Good luck.
Poor you. I had this as well I also lost about 45-50 % of my hair. I cannot tell you how upset I was. I did turn it around quite quickly when I started taking collagen (marine). Good Luck
I have sympathy for you as it’s quite heartbreaking to lose so much volume of your hair. I am still shedding and I’m down to 2mg. It hasn’t gotten better with vitamins, special shampoos or hair loss treatments. The length and texture has changed to very fragile and the color to silvery gray. I’ve been told that Prednisone can have a drastic effect on hormones and this causes the hair loss. It’s a very nasty side effect that I was not made aware of by medical healthcare providers when first starting Prednisone. This whole disease and medication has been a mystery until I found this group.
Hi, lots of posts on this to look at - rough summary of what happens with most people is that the hair returns. This happened to me, in fact it is better than it was before.
My pony tail became very thin too but in these last few months my hair has started growing back. I'm hoping a recent flare doesn't change this. Strange to see the hairs growing back on my legs too in time for summer!
Yep. I am another one who lost about half the hair on my headaround 9mg. most grew back over the next two years but then about 6 months ago, when I was down to about2mg, handfuls came out again. I wear colored headscarves the whole time and stop thinking about it. I still don't have much in the way of eyebrows.
When I was first diagnosed I had lost a lot of hair and was sporting a noticeable bald patch at the side of my head. That was in 2016. I am still on prednisolone 4mg a day at the moment. My hair has all grown back. No bald patches now but instead of fine straight and greasy my hair is now dry, course and curly! I look like Worsel Gummidge first thing in the morning! Even my phone doesn't recognise me 😂
Not sure if we can advertise but OGX (no sulphites) seem to have improved my hair volume. My hairdresser noticed the difference
If something has helped you, then yes of course you can mention it… so long as you aren’t gaining financially… and it’s obviously not a promotional pitch.. 😊
I promise I will not gain in any way!!
Well you've gained in one way - better hair... so I'd take that...😊 What specific products are you using? Biotin & Collagen?
I've have a post in FAQs, so I can add any recommendations as and when .
👍
Please post more about this product as it is allowed and I’m interested as shedding badly
OGX make shampoos and conditioners that do not contain sulphates. I’ve used both the Argan oil and (blue bottle) and the Biotin and Collagen (purple bottle) and the difference has been noticeable. I should add that I’ve decreased steroids to 1mg which will help but still believe these products helped. Boots and others often have two for one offer. I really hope this helps. Best wishes
Thanks I will look out for OXG next time I’m in Boots x
I really hope it helps I know how distressing it can be. Lost all my hair following chemo a few years ago.
Take care
At around 6 months after starting pred, down to 5mg from 15 mg initially, I very smugly declared in this group that pred had made no difference to my hair. Bad mistake. Then at around 7 months, I developed mad scientist hair more or less overnight and I looked like I had poked my finger into the electric socket. It had been shedding for a long time before I started pred and I had had PMR a long time before diagnosis. At around the 7 month mark, it was coming away in handfuls. The regrowth seems to correspond roughly with starting pred, but it also coincides with taking alendronic acid for a few weeks, something else that can cause hair loss. A moisturising conditioning improved the texture, but its not the same as it was. Cutting it a lot shorter seems to have halted the shedding, but my once sleek shiny poker straight hair is now frizzy and curly.
I had very thick hair, which came out in clumps for quite a while. It has grown back even thicker but seems to refuse to grow in length. My beard/moustache is still raving along despite being nearly at 4mgs (again).
Hi! I am 66 yrs old and was diagnosed with PMR at age 62. Welcome to the world of PMR and prednisone! I too had long, thick beautiful healthy hair until I was on prednisone for about 6 months. I started to lose my hair in volumes. It became straggly so I had to have the straggly, thin ends cut, about 3 to 6 inches, which seemed to help as well. I decided to fight back. I started taking collagen peptides, ( Vital Proteins brand in the light blue container), and have been taking it for the last 3 years every morning with my coffee or tea. Benefits: My hair grew back and I would say the volume is back to normal, or very close. I had a hair cut/style done recently so wasn't able to get my hair in a ponytail for a bit. Now that I can I can tell it is definitely thicker! I may have to get it cut again in a few weeks. My nails are stronger but I have to cut them every 3 weeks rather than every 8 weeks. My hair also was wavy but not curly. It started to look a lot like a cross between Phyllis Diller and Willy Wonka but I found and follow Manes by Mell on YouTube and learned a lot about curly hair from her. I also do not use a brush except just after showering using a gentle detangling brush by BESTOOL I got on Amazon for around $8. I go outside and finger comb through my hair once in the morning starting in the back and sides then flipping my head upside down combing gently through the rest until there is little or no hair coming out. I started with gobs of hair coming out but now have very little, like 2 to 5 strands, coming out. My hair is very healthy and definitely less frizzy after following Mell. I have been using Garnier Fructis curly hair products but love the Verb Curl foaming gel that Mell specifically formulated. It leaves your hair shiny and soft. I also am taking vitamin D3 5000 units with Vitamin K2 mk7 50 mg, which helps with tapering as well as scalp and hair benefits. I am also on HRT but recently switched to a bioidentical form of progestin and added a cream form of estrogen, which helps with bladder leakage and urgency plus a multitude of other benefits, including hair being on HRT. I learned this from Dr. Mary Claire Haver, renown for her expertise in perimenopause, menopause and post menopause. Since prednisone robs your body of so many nutrients, I think that it is just as important to fight from the inside as well as the outside. Bone loss is a huge concern when on prednisone so be sure to exercise as well. Side note: I also had itchy scalp, which was confirmed by a dermatologist, that it was hair growth. There was no open sores, flaking, ( or bugs), just crazy itchy. Everyone is different and obviously you need to test what works for you but be patient. It took awhile but I noticed that the "fall out stage" slowed down considerably after about 6 months of taking the collagen. Hope this helps!
My hair fell outwhen the PMR started and I was very ill. That was before I began treatment with pred. It has come back 
I agree with PMRPro - it is most likely the PMR not the prednisolone
Hair loss
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Prednisolone and hair loss
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