Hair loss

[Lilymaerose]

Hi everyone, I am still feeling good and went down to 15 mgs on Friday.

Have actually been able to do things round the house that not been able to do for ages Which feels like a great achievement.

Getting ready to go to Cyprus next Monday And spending 16 days there, first 8 days with 2 girl friends and next 8 with my hubby. looking forward to it

I recon by Christmas I will be bald my hair falls out by the handful, I have been really lucky to have very thick hair but now down to about half a fifth of what I started with. It is growing back but very downy and very slowly assuming nothing will change until I am off the preds

Has any one else experienced the hair loss after everything else it's not a problem but would like to know if it gets any better

[PMRpro Ambassador]

I don't know/can't remember how long you have been on pred but it may not be the pred alone that is causing the hair loss. One of the most common responses to serious illness is something to do with your hair - from just being in poor condition to falling out, sometimes a lot of it. It also rarely happens at the time of your worst illness but often 6 months or so, or even longer, down the road. Mine went haywire (and that absolutely described it) while I was taking Medrol but when I stopped taking that and was switched to prednisone it has all grown back and is as thick as it was before. Prednisolone also hadn't really made a lot of difference - PMR had, it had gone straighter and unmanageable. When it grew back in it was very curly again! Now it is almost shoulder-length it is far smoother. The change has come while still on steroids and it sounds as if yours is growing again too.

Everyone is different - but lots of people have hair problems. And a lot of people have developed curly hair!

[Lilymaerose in reply to PMRpro]

Thanks PMRpro that is reassuring and would be about right. I was diagnosed with GCA & PMR 19th Dec 2014 and put on 60 mgs preds

Always had curly hair very thick and very good condition. Every day I brush it, it comes out in clumps but I also have a soft downy under growth so it is growing back and at least I will have some warmth for the winter.

I didn't start loosing it straight away but about 5/6 month later. This would tie in with what you said.

Hopefully I wont end up bald and if I do I'll just wear a woolly hat

[DorsetLady PMRGCAuk volunteer]

Hi,

Don't necessarily blame the Pred for hair loss. I made similar comments to those in PMRPro's response in another thread a few weeks ago. My mother was a hairdresser all her life, and said she could always tell if somebody had been ill anywhen in the previous 6-12 months by the state of their hair.

Looking back, my hair became very thin and lifeless during the 18months I was undiagnosed, and not on Pred. However after a couple of years on Pred it was back to its normal self, and curlier than it had been for a long time. So don't despair, now that you are feeling better in yourself, your hair may well improve as well, but you do need to give it time.

Enjoy your trip to Cyprus, remember to take plenty of tablets in case you need them (hopefully not), and don't do too much! Just enjoy the company and the scenery.

[Lilymaerose in reply to DorsetLady]

Thank you Dorset lady

I must say that I am not worried about my hair, I might have 6 months ago but just glad to feel well.

Dr not happy that I went back up to 20mgs of preds but now down to 15 again and I intend to go very very slow.

Also I have been told I must go back on the Alendronic acid and that my bones are disappearing with the preds, with out it. When I expressed concern about the side effects and major fractures she said it would not be a problem unless it was for long term, she mentioned 5 years, what do you think.

I am still enclined not to take it and definitely wont until after Cyprus.

[DorsetLady PMRGCAuk volunteer in reply to Lilymaerose]

Hi again Lilymaerose,

I have been on AA for 3.5years, as I am one of those susceptible to osteoporisis,- family history and hysterectomy at 37. I know lots of people don't like the idea of it, but having seen my mother after she broke her hip, I don't wish to go through what she did, so I take it. Hoping to be off it within the next 12 months (definite stop at 5 years recommended) as am down to 3mg Pred at present, and fingers crossed etc will be off Pred within that time scale. Also, I fortunately don't seem to get any side effects from AA which some do, so I suppose I'm lucky in that respect.

But, as we say, you have to weigh up the pros and cons, and do what's best for you and your particular health problems. Unfortunately, one solution doesn't fit all.

As you say, hair loss can be coped with - surprising what you can do with an eye catching scarf, and confidence!

[Lilymaerose in reply to DorsetLady]

Hi Dorset lady

Yes they do lots of options in scarves and hats these days so no probs there.

The AA is OK, I just get used to a bad day the day and night I take it, so I will choose my day carefully. and make sure its a day I can take it easy as they always make me feel rough.

I was just so worried about fractures I didn't want to risk it.

Thanks for the re-assurance. Its sometimes finding the balance between the benefits of some of these drugs and the disadvantages of the the side effects

[DorsetLady PMRGCAuk volunteer in reply to Lilymaerose]

Yes it certainly is a bit of a minefield. For everybody who says it's ok, somebody else says - no its not! I take my AA on a Sunday usually, as I'm on my own now and don't usually do too much that day. Sometimes it makes me feel a bit iffy, if you know what I mean, so if I feel lazy I can be! Pleasing yourself is one of the good things of being widowed! If there is a good thing that is!

[Lilymaerose in reply to DorsetLady]

Cannot imagine what it must be like to be widowed, my husband has been so supportive

Since I have been ill i,don't know what I would do without him.

I will prober ly take the AA on a Wednesday as it is my quietest day to do so. Having the boarding kennels weekends are always busy.

At least I can rest if I feel bad.

[DorsetLady PMRGCAuk volunteer in reply to Lilymaerose]

So was mine, before diagnosis and afterwards (particularly the first six months dealing with sight loss in right eye) despite having heart problems himself.

Unfortunately a couple of years ago he developed liver cancer , which wasn't diagnosed until much too late to treat, and died within five weeks. But I consider myself very lucky to have been married to him for 46 glorious, funny and loving years. Nothing can take that away!

[Lilymaerose in reply to DorsetLady]

I think you have to look at things that way treasure what he gave you not what you have lost.

It must have been awful for you. I have seen it happen to my customers and I don't know how they cope, but it does make me appreciate mine more and we have been married 25 years next April.

We both got married late but it is our first marriage

[Adnamaxx in reply to DorsetLady]

Sorry to hear about losing your husband. Mine too has liver cancer but more than that he had a stroke in 2014 and his mind not the same. So although he is with me in a not so healthy body he isn't the man I married.I like your attitude as I too am thankful for the happy years we shared prior to his stroke.hopefully surgery can cure his cancer but he will never be the same man and is actually often agitated and aggressive whilst seeming plausible to the outside world.I am sure the strain of this brought on my PMR.

[DorsetLady PMRGCAuk volunteer in reply to Adnamaxx]

Thanks. Your comments about stress and PMR are so true. Trouble is, when we start caring for a loved one, we don't realise how much strain it is on us (probably just as well we don't!). No matter how others sympathise they don't know what a "full on" job it is, unless they've done it themselves.

But as I used to say to my husband when he expressed guilt at me doing things he thought he should be able to - if the situation was reversed I know he would care for me as I cared for him- that's what love's all about.

[Jilldrog in reply to DorsetLady]

I have read with interest this forum for several months now as I get little medical support from my GP, and am pleased to read my suspicions that my PMR was brought on by stress. My husband had suspected Alzheimer's Disease confirmed by brain scan in May 2012, and has slowly detoriated since then. My PMR was confirmed May this year and I feel this is due to the stress I am under. He doesn't understand what I am going through, and I find it quite difficult to take things easy on bad days, as I am constantly on duty keeping an eye on him, but at least I have his company whilst he still realises who I am!! Love this forum as I can get so many answers to my worries. Keep up the good work.

[DorsetLady PMRGCAuk volunteer in reply to Jilldrog]

Quite agree with stress bringing on PMR, it comes up time and time again. Good luck to you and your husband.

[HeronNS]

I've noticed that my hair, which used to be very thick, is getting thinner. I think what is happening is that my existing hair continues to grow, but as it falls out at a normal rate, new hair is not growing to replace it.

[Annodomini]

It took some time (about three years post diagnosis) for me to notice that I was losing hair - when I brushed it, there was hair on the carpet! I have always have fine hair and was pretty fed up that it was also becoming sparse. Funnily enough I didn't associate it with PMR/pred although I have now been taking pred for 4.5 years. Thought it was just a symptom of old age - I'm 75 this week. But now you mention it.... Thankfully, it seems to be thicker again - I'm now on 4.5mg, again - and is definitely more curly than it once was, especially in damp weather.

[DorsetLady PMRGCAuk volunteer in reply to Annodomini]

Aah yes! The damp weather certainly has a lot to answer for! No point in trying to be sleek and sophisticated! I wish! Go with the flow as they say. When I was 16 (many moons ago) I would have died for the Jean Shrimpton long straight hair look, but never to be! Guess I'm stuck with the curly look. Ce la vie.

[alice1940]

I have have been on steroids for PMR since March started on 20 mg now am on 9.05 . I too have noticed my hair is getting thin at 75 l thought it was old age !!!! But after reading this forum it must be the steroids ! How l like the curls though my hair was only naturally wavy now its curly and it is just wash and go now Alice

[195094]

I, too, have experienced a big hair loss. Rheumy's response is "it will grow back"; easy for him to say!! I am down to 8.5 mg. and am seeing some hair starting to return, but like you say, very downy and a little frizzy. I have very fine thin hair, so the loss was a big challenge to handle. I chose to keep it a little longer in case I needed a comb over (ha). I feel your pain and thought maybe I was the only one. It has been a major depresser for me and can't tell you how excited I was to see new growth--my early Christmas present. I also am have hypothyroidism, so kind of wondered if that was the cause, but now believe the prednisone is a major contributor! Like you; sure hope it improves!

[Lilymaerose]

Thank you all for the support I had my hair cut to shoulder length when I became ill as it was very long and I could no longer manage it. Now I tie it up in a knot so it doesn't notice that much any way. Just the short new growth tends to stick out a bit

I felt very self conscious when I put the weight on and customers would come in and ask for me because I didn't look like me any more, especially with the steroid face, but they have all been so amazingly supportive that I lost the embarrassing feeling pretty quickly. Now I don't mind what I look like, there are more important things to worry about and looks are not one of them.

But thank you all for your support

[caz3333]

Hi there, sorry to hear about your hair loss which I am sure is the prednisolone. I had lovely thick straight hair before I was diagnosed with PMR over 2 years ago. Was put on 30mg then gradually reduce, generally can manage on around 5mg now with an occasional flare up which means an increased dose again for a short time. My hair is still coming out, although not as bad, and I have tried everything. I don't have it highlighted anymore, used shampoos without added chemicals and it hasn't made any difference. I am now trying Plantur 39 to see if I can encourage it to grow and stop thinning. It is depressing as you have enough to deal with coping with the PMR! Enjoy your holiday & try not to worry too much. X

[Lilymaerose in reply to caz3333]

Hi Caz3333

It's nice to know I am not alone in the hair loss, there seems to be plenty of us out there. I am in Cyprus at the moment just about to go to bed and have been here a week and only just got the wifi sorted.

They are not geared up for disabled people here so not been that easy

But the weather has been a welcome respite from the cold of back home.

My hair has thinned even more since my last post and starting to stick out where the biopsy was shaved and where the new growth is, so going to take some time looking strange for a while but hey ho who cares, l haven't looked like me for nearly a year so getting used to it.

I think the thing I find hardest to cope with is the weight gain, and moon face.

Am waiting on my hubby joining me tomorrow, we're heading off to Pathos, the Greek side so looking forward to that and I am missing my 3 dogs so another week and I will be very ready to go home.