I was diagnosed with PMR 6 months ago and started with 20mg of pred and within a day the pain had gone. But I started to quickly feel unwell on pred had tightness in chest, shakes on waking, headaches, erratic heart rate,, fatigue I asked my gp to come off the meds. I got down to 5mg but the pains came back so bad i had to increase pred and have gone up to 8mg. I cant go higher as the side effects will start to kick in again Recently I've noticed I'm losing my hair its shredding and breaking has anyone else experienced this?
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Blonde61
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Hello Blonde61 no advice but around 5months after I started on Prednisolone for PMR I did notice my hair thinning and could shake my head and see the hair fall. Luckily after about 6 weeks it seemed to stop as abruptly as it started. It soon thickened up again and I’ve had no more trouble. I think the opinion is that it’s as likely to be a reaction to being ill as being on steroids. Hope it soon settles for you, it’s certainly disconcerting.
Also your reduction to 5mg seems very rapid. I did have most trouble reducing between 9-8mg and then have stuck on 1 or 2mg for years. I’m sure people will be along with advice for hair and to help with steroid s/e
When I was nursing i saw many patients lose hair in response to systemic illness. I was no different. Five months in my hair nearly all fell out over a week. It grew back fairly quickly. Over the next few years it went though various phases and had another go at falling out when my body was under stress with poor adrenal function. Keep an open mimd, anything can happen ! 🙂
Your right I hadnt noticed I was losing hair until my ear started to stick out through my hair and I suddenly realised how thin it felt
The 8mg isnt controlling it completely but as Maissie1958 kindly suggested I probably reduced too quickly. Wish GP had given more advice on what to expect In the morning when I wake up I feel like Ive been run over by a bus but it eases in the afternoon and I am able to do more. I go for walks every day for exercise
The speed isn't necessarily the crux - you are never heading relentlessly to zero anyway, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. Theoretically, you could shoot down to that pretty quickly - but since everyone is different, you don't know in advance where you find the dose that is slightly too low and while you could yoyo to find the sweet point, like doing a titration in chemistry in school, that is known to cause problems for a lot of people.
Your experience sounds very similar to mine. I had quite thick hair before being diagnosed but several months down the line my hair is dreadful. It’s become so thin and very dry. I have noticed over the last week though that my hair has stopped falling out. Currently down to 2.5 mg.
Thanks for your reply and sharing your own experience. I have very fine hair and losing it has started to make me feel depressed. Hopefully it will settle. Thanks
I too have experienced hair thinning since being on steroids. I eventually noticed that my pony tail felt much thinner! The situation has stabilised now but I'm very careful what I put on my hair...no parabens, silicone, formaldehyde or sodium lauryl sulphate. Just natural ingredients. I definitely think that's helped. Weirdly though, arm and leg hair has increased as has 'peach fuzz' on face!! I also experienced tight chest, palpitations, on higher doses and headaches for a week or so with each reduction in dose. Had to increase again for a flare at Christmas. Unfortunately, you have to increase as high as the need requires really. Nothing else will mop up the inflammation so we have to accept the consequences more often than not. Sorry you're having such a difficult time.
Thanks you very much for your reply. Know what you mean about fuzz on face . I didnt expect the side effects to be as bad as they have been and it's all been a bit of a shock. Thanks for your tips about what to avoid to use on hair it's been very helpful. Thanks take care
I know it can be a bit disconcerting but on lower doses most of these side effects diminish. I constantly tell myself to be grateful because there are far worse things I could be having to deal with! ❤
We do get different problems sometimes. I got face fuzz, thinning hair and bald legs. Just pleased to see some slightly hairy legs again, hoping that means face and head might change too.
My hair became very sparse & brittle when on the higher doses of prednisone. It has now grown back very curly. ( it was always curly but not as much as now). I’m currently on 6 mg
That's interesting to hear.....I've noticed that my hair now has a wave in it and becomes quite curly if it gets damp! All my life it's been as straight as a die so I'm quite happy about it. Would love to know why though!😄
Hi thanks for your reply. Did you get stuck on a dosage for awhile before you could reduce. I'm on 8mg because higher dosage makes me feel really ill. In the morning I'm not good but it eases throughout the day
I am also experiencing hair loss for the second time. My hair is thin I'm scared to comb it. When I tapered from 8 to 7mg 2 weeks ago I got PMR but fortunately not the GCA symptoms back so have gone back to 8. Still have some sore muscles but especially feet. Rheumy away until 8th so not sure what to do until then. Put up with it I guess
Sorry to hear your having bad time of it. I know how u feel about combing your hair I also dread it and hold off washing it as long as I can. Hope things settle for you soon. Take care
I found the side effects of the pred to be all consuming at first and also meant I could hardly do anything. I started on 40mg, after a three day 3gram drip and it was terrible. Heart pounding out of my chest, the feeling of constantly standing on a power plate and other symptoms. My hair has never been that great, but the loss has definitely got worse. However, as time went on and now I am on 12.5mg the symptoms are most definitely less and manageable. I do get tired, almost like someone has turned the light switch off, and so just go with it. Sit and rest or have a 20 minute nap. But I am definitely coping a lot better with it all now. It's a hard call but the pred clearly does a good job for what it is there for. Feel for you though.
Thank you for sharing your own experience I feel for you and hope things improve as they seem to be now. I am so grateful for all the advice I have had so far from the forum it has given me hope that things can get better
This forum really is amazing. I totally respect everyone on here and their advice over many medical opinions I have heard over the past 8 months elsewhere. I would always come here first! But I won't tell the medics that!
Hair loss is a common Prednisone problem. I eventually learned to live with my very thin hair. I am now down to 2.5mg , and this week I got a wonderful surprise, a little fuzz on my legs 🙂 Happiness comes from strange events now days. I thought I would not get any regrowth until about 6 months after I stopped pred. I am living in hope.
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been off prednisolone for a month
Update on pain symptoms
Pred hiding or lowering inflammation?
Well, I'm flabbergasted!
