PMRGCAuk
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Hair Loss

I have never taken Lorazapan for the side effects of Prednisone. However, when I started on 60mg after my diagnosis of PMR/GCA last summer I felt totally wired, very jittery and like a completely different person. It was very unpleasant. Thank heavens that subsided as I decreased the dose. I did have to take sleeping pills for quite a while.I am now down to 8mg Prednisone but my hair is coming out and have been told it is Telogen Effluvium, which could be due to the illness, taking steroids or being very anemic (which I was last summer and had to have a couple of iron infusions). Has anyone else experience hair loss due to PMR/GCA? It is very upsetting. I feel vain for even being upset especially as I will be going through getting of the steroids soon. But I am wondering if I will go bald.

Thanks.

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Hello. Yes indeedy! It suddenly started to fall out after 5 months last August in clumps over a few days just before a cruise holiday. I looked quite ghastly. My emergency wig didn’t look much better! I do think it was stress and a delayed reaction to the GCA. I’ve seen it in people with other illnesses. Now it is all back. Others here have said the same.

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Hi SnazzyD, so relieved to get your email. Did you ever see a doctor about it? If so what did they say (though it seems they don’t usually know the reason). So glad it grew back for you. It was definitely about fiver or six months after having the diagnosis. I am crossing my fingers.....I try not to comb my hair, or look in the mirror for that matter!

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I had it with chemo years ago too. Really if the hair follicles have gone South for the winter, not combing won’t help, it’s going to fall out. I didn’t go to the doctor because it seemed like a natural thing to happen. It is like when people have had a bad infection, they shed their skin afterwards sometimes. I think also the hormones become unbalanced too. I have got a range of scarves and hats and of course my disastrous wig.

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My hair thinned quite a lot initially too. It is part of the illness and can also be a side effect of steroids. Stress doesn’t help either. Two years in and on 7 mgs of Pred it seems to have recovered somewhat. My hairdresser has been helpful with a clever layer cut and low lights that give the illusion of more hair. Good nutrition helps and being gentle with your hair, my new cut means that I just arrange it with my fingers, no brushing or combing.

You’re not vain, it is upsetting and there are remedies.

People often come on asking the same question, so you are not alone. I don’t think sleeping pills would have done anything other than help the stress of it all.

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I like you I have and still have hair loss and found it very upsetting, I've tapered to 15m and it's definitely eased, I'm taking medebiotin recommended on our site so hopefully it's helping as well I've just started on turmeric I also felt horrid when I was on the 40m shaking felt in a strange body, this is first time since diagnosed last October but suspected before, I have started to go out for a few hours instead of being stuck at home which has been a morale booster. Going for pedicure,/manicure mothers day gift. But you same as us all will find fatigue waiting plus I don't want to take any risks anyway good luck

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I got some Neem oil from the Bahamas, natural remedy, although I still have long dreadlocks, I have thinning hair line. I've been growing my dreads for nearly 20 years- so bit of a big deal for me. I just went to 35mg Prednisone yesterday, for 2 weeks

I'll be on 20mg in 4 weeks then a review

Fingers crossed my hair will survive this!!!

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Yes and I empathise...boohoo! Mine is coming out a lot now. I'm 18 months into taking Pred and down from 15 to 10 (with a big flare in between when I'd got down to 6 and had to go back up to 15) and the noticeable hair loss started after about 6 months. I know it sounds awful but actually I don't wash my hair any more and what I still have left is absolutely beautiful! I do let it rinse sometimes in the shower but I never use shampoo or conditioner or any other products and my hairdresser always comments on what fantastic condition it's in compared to most of his clients - apart from the thinning! I keep it clean, and my scalp, by brushing with a pure bristle brush - a bit of a pricey initial outlay but worth it and I'm not spending anything on chemicals. I'm hoping it will grow back as I taper off the Pred - fingers Xd. Meanwhile I pull the clumps of hair off the brush and put them on the window sill for the birds to collect and line their nests with :)

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PS: I'm not taking Lorazapan. I think it's the PMR +/or the Pred in my case

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Illness is often reflected in your hair - and not necessarily at the time but a few months later as the hairs that were just beginning to grow while you were ill would be replacing the hair volume on your head. As Snazzy says, not combing won't help, your hair is shedding all the time and new hairs growing back in behind them. If the new hair growth is slowed or lessened, you notice your hair thinning.

My husband used to get really annoyed about the amount of my hair around the floor - I have been white since I was 40 and wear my hair relatively long though not beyond shoulder length now. That was with PMR but long before pred - so I can't blame the pred. What had changed with PMR was the curl and bounce, it went straighter and sat differently. I was put onto methylprednisolone for about 7 or 8 months and that was an utter disaster - my hair fell out and turned into a brillo pad! I had had no problems with prednisolone and when I was switched to a form of prednisone - all back to normal within about 6 months. Except it grew in more curly again! But has smoothed out as it has grown longer.

Like xdbx I rarely wash my hair - about every 3 weeks and it is the only soap that comes near my body! I have shiny and beautiful white hair and good skin that everyone comments on - and believe me, in that year around the Medrol they were both awful. It will come back. In its own good time.

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Yes, Yes, mine started falling out about 6months after taking Pred for GCA. As I have long hair it was everywhere. It was about another 6months that it started to lessen and now I am down to lmg of pred nothing except the natural hair shedding. It was so distressing at the time and I empathise with you totally but it will get better. I did not involve any doctors and I knew that it was pred that caused it.

I wish you well and remember you are not alone.

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Thanks so much Ipsidipsy. Very encouraging. It seems from the responses that I am not alone and it so helpful to hear that others have or are going through it. I am glad yours came back and I am hoping mine will too. Definitely going in search of a couple of hats though, just in case!

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Mine started falling out around 6 months into pred. I had long hair, down my back, but couldn’t cope with hair all over the floors, in plug holes, in my bed, a brush full every morning. I was only washing it every 6 weeks or so, too much hassle!

Now I’ve had it cut, chin length. Cut cleverly, explained the arm thing to my hairdresser, so he’s done it so I can bother as much as I want to. Quick straighten or au naturale.

Definitely less falling out. But he said to expect a growth spurt after the cut. I think he’s right, it’s growing, but not necessarily in synch!

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Oh I get that - isn't it a pain!!!!!

I have a fairly good hairdresser here - but she has this thing about blowdrying! She fiddled for ages yesterday while I thought "why do you waste your time?" This morning I got up to hair sticking everywhere, as I knew I would! Only took a few second with the dryer but still! I haven't identified a male here - that is the thing I miss most from the NE of England. Ross in deepest Consett was SOOOO good.

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Thanks Soraya, it must have been a shock to lose hair after having such long hair....yes, it does appear to be everywhere when it starts coming out!

Amazing that one has any left at all on the head! I guess it takes a while to get it all the same length afterwards, haven’t reached that point yet, but good luck to you.

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Thanks.

Yes, it was weirdly light, and nice actually not to have some kind of clasp pulling it back all the time. Easy peasy to wash now.

My younger son loves long hair, has always said to me don’t cut it. First time he saw it he said “That’s it you’re officially old now!” LOL, about time he realised I’m not a spring chicken.

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Don't despair, Stella3.

Started on 40mg Nov '16. Also terrible pred side effects, but not sure if hair thinning due to GCA or pred or, likely, both.

Agree is v distressing - just when you're at your most vulnerable. V bad for morale.

I'm down to 7.5, aiming for 7mg w difficulty, but think the thinning is not as bad as it was. Might be wishful thinking, but definitely hasn't got worse for a month or 2. Fingers crossed.

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Hi BonnyQuine,

Thanks so much for responding. You are right, we do feel vulnerable etc. Isn’t it amazing how we see our hair on everything once we feel we are losing it! It seems that you and I are at the same level with the Prednisone. I started last summer at 60mg but am now down to 7mg. Good luck with the decrease. I am decreasing by lmg per month, how about you? You didn’t mention if you had PMR and GCA? Anyway good luck with the decrease....hope it goes okay for you.

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Me too. Hair was actually thinning before my diagnosis, but got much worse 3 months into treatment, about Feb-Mar of 2017. Suddenly a few months ago I noticed that I didn't have to clean my bathroom floor of hair quite as often. It is definitely coming back.

This was a general thinning as opposed to a postmenopausal androgenic pattern thinning. I'd had the the latter some years ago and have used minoxidil to control that.

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Yes, you are right a general thinning. My hair is looking wispy....happy to hear yours is getting back to its old self. It gives me hope.

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