Hair thinning, help

i have been on prednisone since oct, started 40 mg, now down to 17.5,since jan 18, noticed hair thinning about a month or so previous to that when i was on 20 mg, i have read this happens, while taking prednisone, or when tapering, in my case, i don,t know if its because of dosage or length of time i have been on it, supposedly for pmr, which have not had a confirmation of that diagnosis to date, gp diagnosed in oct, but rheumy reluctant to confirm, because no baseline bloodwork was done in beginning, even though symptons were there, and decreased with pred. at any rate, interested in hearing about hair loss, or thinning, and what if anything is anybody able to do for that, it,s quite upsetting, as ive always had thick hair, and don,t know what to expect, that is when it will stop thinning, or if it will stop, appreciate hearing from anyone, thank you

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  • Hi arvine, I had the same problems when I got down to about 12mg pred. Hair got very thin and it was very distressing indeed. In my case it lasted about 6 mths and then stopped, I had a very sympathetic hairdresser which helped a lot. My hair like yours, was also very thick, and I used to dread shampooing it as I could see how much was coming out. Hang in there......it will get better....I promise. One other bit of advise....don't waste your money on hair thickening products.I think a really good vit and mineral tablet helps though. ××

  • Yes, it's a common side effect of Pred but not one that I got. Instead I got the ruined nails and awful teeth. Hair will grow back, but not teeth!

    Whatever the circumstances behind the reason of putting you on steroids, that is the main point here and now. You are taking them and you are reducing the amount you take and no one can do more than that.

    I am currently on 6mg and I will never be off them. I have adrenal insufficiency and will be on them for life.

  • Whereas my nails were wonderful on pred and teeth are also fine...

  • Hello Polkadotcom

    I have followed your posts and realise you hold a wealth of information. I am interested in your knowledge of adrenal insufficiency. My cortisol count is presently on 20 - instead of 200. I am so fatigued I can barely get off my bed. I feel vague, weak and a tiny bit frightened. I am set to have tests on my pituitary gland next week. Do you know if this situation can be rectified? My natural instinct is to just lie on my bed.

  • What do you mean by "cortisol count"? How was it measured and how long after taking the previous dose of pred? And what dose of pred are you on?

    If you have a pituitary problem that means the system that produces cortisol isn't working properly then you may not be reliably producing enough cortisol which is essential to life - and excessive fatigue as you describe is one symptom.

    In some ways it is like diabetes and insulin not being produced - and the way it is dealt with is basically the same: you give replacement therapy in the form of an adequate pred dose once per day or hydrocortisone 2 - 3 times a day.

    It can happen as you reduce your pred dose below about 5mg, although the fatigue may start about 7 or 8mg.

    This is a pretty good article about it:

    aiunited.org/glucocorticoid...

  • I apologise if I seem a bit vague. The "20 nmol/L" is my blood cortisol showing in a blood test result (taken the day after a 10mg dose of prednisone). I believe it should be around 200nmol/L.

    I don't know what 'nmol/L ' stands for.

    My thyroid result is normal. My prednisone dose was at 10mg but my specialist has now asked me to raise it to 20mg. I have had GCA for two years and lost half sight in my left eye - had to leave work because of this.

    I am worried because of the way I am feeling. Fortunately I will see my specialist rheumatologist next week. I feel this symptom of my illness may not be in his 'area' any more.

    Regarding cortisol being "essential to life" and my obvious deficiency, the fatigue I feel is quite worrying. However - I will have the relevant pituitary gland tests next week and hopefully can move ahead from there.

    Thank you so much for your and Polkadotcom's time and assistance with this. I will let you know the outcome.

  • If you are on over 20mg of pred you needn't worry too much about your cortisol being low - if the test is specifically for cortisol it WILL be low because the artificial dose of pred suppresses the production of cortisol.

    As I said before, the way to manage adrenal sufficiency is with a daily dose of pred or hydrocortisone and you are on more than enough to replace your normal production of cortisol. As any doctor should know that being on pred interferes with cortisol production I wondered if your test had been from a naturopath or other alternative medicine practitioner.

    If you also have pituitary problems/deficiencies there will be other hormones that may not be being produced properly. I think you have to wait until you see the specialist - but the cortisol level is the least of your problems at present.

    Do tell us what they find - as we are a nosy lot ;-)

  • I was on 10mg prednisone and my doctor shot it up to 20mg after seeing the blood test results. I feel more at ease now after the advice you ladies have provided. Thank you. Next week I have an endoctrinologist appointment so I feel I will get the necessary assistance now.

    This forum is truly a blessing☺️

  • That's such a useful link PMRpro. It lost me a bit towards the end (masses of technical stuff!) but it's invaluable for explaining the secondary, prednisolone induced, adrenal deficiency.

    I was diagnosed with GCA in June 2016 and started on 60mg pred. I go to Dr Val Kyle's clinic at Bristol Southmead and feel confident with my reduction programme. On 8 mg I had some good and some bad days. I'm currently on 7mg for a month but feel pretty ropey. Headaches, sweats and fluey symptoms and unbelievable fatigue and exhaustion. I'm willing to tolerate this because my pred side-effects have been so extreme, particularly on the initial high doses. I just hope this isn't anything to worry about. I guess I now wait to see if the adrenals will wake up. Or not!

    Thank you so much for all the advice that you and others dispense on this message board. I lurk here most days..

  • If the ropeyness doesn't improve over the next couple of weeks then it might not be a bad idea to go back to 8mg and wait a couple of months before trying again - plenty of people find that when they get this low that it takes a few attempts to get to the next dose happily. I'm not prepared to compromise - I take the dose I need to feel good. I do keep trying to reduce and have done so. But not at the expense of feeling downright unwell.

  • Thank you so much for that advice PMRpro and I'll follow it. I can tolerate feeling unwell if it's doing the job of reducing the pred dose. On the other hand I don't want to cause myself harm as a result and want to stay safe. I'm widowed and live alone (with a considerate son living close by) so I don't affect anyone else. I only started on 7mg this Monday so I'll give it a couple of weeks then asses the situation, as you suggest. I confess that I took 8mg this morning as I felt so rough - but it doesn't seem to have helped. Maybe do 8/7 alternate days for a week?

  • Willowherb, whatever you do, don't tolerate feeling unwell so you can reduce the pred, it does not work. Once the inflammation takes over, you cannot stick it out, you must get the inflammation back under control which means increasing the pred dose. So taking it slowly can actually make things faster.

  • Right. I see. Thank you piglette. I thought I could tough it out for the greater good! The rheumy said 8mg for four weeks, then 7mg. Then Stick at that until I see her. Even on 8mg I would be on quite good form for a few days then down again. By down, I mean exhausted, breathless, legs refusing to work properly after 10 or so paces and headaches. That sort of thing. I guess you all know what I mean!

    From the advice I'm getting from you and PMRpro it would seem that staying on 8mg for another week or two would make sense. That's what I'll do then. Thank you for the support. I feel better already!

  • If you have 1mg tablets then get a pill cutter to make 1/2mg doses and then try the Dead Slow approach too:

    healthunlocked.com/pmrgcauk...

    This helps smooth out the change and often seems to fool the body into not noticing the change as much. Alternating doses does seem to confuse some people's bodies - some people are far more sensitive than others.

  • Thank you PMRpro. I already feel much better after 3 days on 8mg. I'll leave it another few days before using my pill cutter on the 1mg tabs and stay at 7.5mg for a couple of weeks or until I feel stable.

    Having started at 60mg in early June '16 I stayed on that high dose for a month before reducing to 50mg. I was pretty ill-informed and fearful of losing my sight and ignored the GP's reduction instructions. Stupid. I was also pretty manic!

    In August I became paranoid and my desperate son took me to Dr Dasgupta. He referred me to Dr Kyle and I'm in good hands now. I've also found you guys, which has been a revelation.

    I have a bad history with prednisolone which is why I've been so keen to get the dose as low as possible as soon as possible. As you say though, slower may been sooner. Thank you.

  • Hello, I've come into this late and PMRpro has already asked all the questions. A little more information might help us help you.

    I'm also intrigued about a 'cortisol count' because as far as I know, there is no such thing - but perhaps I'm right out of date.

    And if you need to rest - just do it. You don't need to feel guilty or ashamed. You have a medical condition which requires rest as a treatment and that is that.

  • Does anyone take biotin? I take it every day for years - because I started losing hair with Hashi's. I believe it has helped a lot, as I've been on prednisone since Dec 2016 and so far, so good. My hair came back a few years ago from the hashi's, and is still the same now while I'm on the prednisone.

  • I had already lost a good deal of hair prior to PMR because of my lovely gene pool. I lost more during the early months of treatment with prednisone but then the pace of loss slowed down, then stopped. Sadly no regrowth for me, but I had been told years ago my thinning was genetic. I actually got a "topper" hairpiece because otherwise you can see my scalp gleaming in the sun. Argh. But it looks good, my own hair blends right in with it, so my hair looks better than it has in years. It's easy/comfortable to wear.

    My nails started falling apart a year before my diagnosis. They got strong and long again after about four months on pred. Now as I taper lower they're breaking again.

  • I came to the conclusion that a deterioration in my nails was a sign there was a bit more activity of the autoimmune disorder - and affecting the blood supply to the nail bed. I'd love some proof!

  • I lost a lot of hair as much as half of it... I was already taking Folic Acid so my rheumy added Biotin and that did the trick... she though taking both of them might help and it did. My hair was very very thick and it's now growing back...I have bits sticking up everywhere... but so happy to see them !! I started seeing the difference after about a week...Hope this helps.

  • oh thank you seabyrd, i will go purchase that asap,,

  • Good luck to you I hope it does work for you... be sure to take Folic Acid as well.

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