Hair loss due to prednison

[Ollanda]

Hi all, I am new here. I am an 48 year old Dutch woman and I was diagnosed with PMR in February 2017. I was wandering if anyone here also has hair loss as a side effect of the prednisone and at what dose your hair became normal again. I am loosing a lot of hair since this summer and no shampoo for hair loss helps I am currently on 7,5 mg (started at 15mg). Thanks for your response!

[Zofitmogelijk]

Welkom compatriot, I have no answer to your question since I am not Losing that much hair ( one Year on the predpath, now only 2,5 Mg. ) hope for you there is growing a lot of hair back in a while, Aletta

[Ollanda in reply to Zofitmogelijk]

Thanks! Hope so too! Groet Florence

[Mary63 in reply to Zofitmogelijk]

I have not suffered hair loss, but my hair has changed from straight to wavy.

Mary (PMR diagnosed Jan 2016 , now on slow reduction from 10mg to 9.5mg.

[Ollanda in reply to Mary63]

Thanks for your reply Mary!

[Grammajoy in reply to Mary63]

Interesting.. My hair suddenly started being curly and I never considered the prednisone, but happy there is some good side effect. I am also noticing thinning of already fine thin hair but with the curl I can mess it up and go😆

[Islandgirl50 in reply to Mary63]

Oh , I do wish mine went wavy , started on 65 mg 17 months ago . Methotrexate 20 mg , and my hair is still as straight as can be! I have never had any hair loss.( I am now down to 4 mg prednisalone, but it has been rather troublesome from 10 mg down, am doing the slow slow way now , not in a hurry to try lower until after Christmas.( I have GCA also)

[Hindags]

I lost a lot of hair. Thinned all over, not patches. I started 20 mg 12/ 2016. Now at 8.5. I think I'm losing less now but then there is much less to lose. Hairdresser says she sees new growth. Maybe just wants me to be hopeful.I have a friend who lost a lot of hair from MS and meds. She was told by her MS doctor to take 10,000 mcg biotin daily. I was told by my Dermatologist to take

[Ollanda in reply to Hindags]

Hi thanks for your replaty, biotin is a good tip, what did your dermatologist advise, the same? I hope your hair is becoming better for now on! My hair also thinned all over, I wonder when it wil stop thinning....

[Hindags in reply to Ollanda]

My Dearmatologist recommended 2500mcg which is equal to 2.5 mg.

[SheffieldJane]

Hi Ollanda and welcome to the site! My hairdresser tells me that my hair is growing back. It doesn't seem so wispy. I am 19 months into the condition and on 7 mgs. I think illness also impacts on hair so I put some of the blame at PMR's door.

I used to use a little dry shampoo at the roots, it seemed to give my baby hair a bit of body. I also had it cut into a shorter style with highlights and low lights giving the illusion of body. It's upsetting isn't it? Along with the disappearing waistline!

[Ollanda in reply to SheffieldJane]

Hi SheffieldJane, thank you, yes it’s very upsetting, Washing my hair has become a horror. Good to hear that your hair is becoming better. And indeed the sickness itself can also be part of the cause. Thanks for the hair tips!

[Hindags in reply to SheffieldJane]

I have switched to an Argan Oil shampoo and conditioner. My hair has gotten very dry and Frizzy. It has helped with styling. I'm afraid to color my hair. Worry the dye will be hard on what is left. But dye really helps the frizz factor.

[HighlandCat]

Hi there

I have had significant hair loss but I do have a large thick curly mop so it wasn't that noticeable. But I do use nioxin conditioner and felt that it doestrogen help. The texture of my hair has change to being very course and the curls are now very frizzy....or should I sayou more than normal.

I hope you find something that helps for you.

Take care

Cat

[Ollanda in reply to HighlandCat]

Thanks for the tip, I’ll look into the conditioner !

[PMRpro Ambassador]

Hair loss is often a result of the illness - and it can take a few months for it to appear. So hair loss in the summer could be due to the PMR in February.

[Ollanda in reply to PMRpro]

Didn’t think of that, so maybe I am on the way back but it will take a while extra, thanks

[Slowdown]

I lost quite a lot of hair last year after 2.5yrs on pred but then it grew back at around 7mg, first of all in a frizz which then grew curly, and I mean spirals! I got the scissors out and gave it a cut and love the new look .. I think the bubbles on my head just reflect the inner brain fog Take heart, it does grow back.

Unfortunately, I've recently had to increase due to a flare so am awaiting the same cycle all over again...

[Ollanda in reply to Slowdown]

Thanks, and curls would be nice 😉 Good luck with the flare hope it won’t be the same all over again for you

[Allsgrandso]

Hi Ollanda, welcome to a fantastic supportive group! I’m afraid I also have noticed my hair getting thinner and falling out a lot more than usual lately 😢 I was diagnosed in July,(age 50)started on 15mg Pred and now at 10mg. Finding it hard to get below 10 🙈 just treating it gently and trying to look after it although I think if it’s gonna fall it will. Hope you are well X

[Ollanda in reply to Allsgrandso]

Thanks and take care!

[BoltonleSandsB]

Hi Ollanda

I have just started losing hair after being diagnosed with PMR in March. My doctor thinks it is due to me reducing Pred. I am down from 15mgs to 5. Like you I dread washing my hair and even combing it and hairs all over my clothes! I have found that a John Freida serum put on my wet hair and then blow dry thickens it substantially. Apart from my chubby cheeks I am not doing to bad!! Keep positive and all this will pass. Lovely speaking to you and take care.

[Ollanda in reply to BoltonleSandsB]

I also have been thinking that the reduction of the prednisone might be of influence. Good luck to you!

[Margot23]

Hello Ollanda, join the club! My hair has thinned so much since starting on ‘the Prednisone path for PMR’ in February this year but I have also been taking Celebrex meds for the last two years for rheumatism, mainly affecting my hands and finger joints. Amongst many other possible side-affects of Celebrex is hair loss but I was lucky as my hair remained perfectly OK. Now, I think due to the combination of both drugs, my hair has gone from fine - (but lots of it), to fine - (with about half the amount of actual hair, that seems very reluctant to grow)! I am currently on the ‘slow almost stop’ method reducing from 15mg of Prendiscilone to 12.5mg, I am very much looking forward to getting down to the very low doses and hopefully leaving behind some of the side affects of Steroids. I would be lost without the information and help provided by this Group.

[Ollanda in reply to Margot23]

I hope you’ll be on a low dosage soon. For me I am very curious at which dosage the hair will be growing/ not falling out as before. I am now @ 7,5 going down to 5 in the course of 2 months. For now still no improvement

[Margot23 in reply to Ollanda]

Yes, I would like to know that. Hair loss is quite depressing, on top of all the other symptoms. Oh well, we must remain positive... and hopeful that our hair will stop falling out!

[pmrkitty]

Hi Ollanda, I started symptoms of PMR in February 2017and started losing hair before starting prednisone (started approx. 8weeks ago). I think I'm now losing even more on prednisone so I think it is probably a little bit of both. Hopefully it will start growing again soon as my hair is becoming unmanageable. I'm even thinking of stopping coloring, shaving my head and buying a wig to wear while it grows out and just going grey. I just don't know if it will age me even more and not sure if I could handle another change to my constantly changing body...just thinking. Hope your hair grows back soon, soft hugs.

[Ollanda in reply to pmrkitty]

Thanks, hope your hair will soon get better as well!

[Hindags in reply to pmrkitty]

I was using minoxidol before PMR. It was due to typical androgenic age related hair loss. Then Pred and things got worse, a general thinning. I continued with the minoxidol using it more broadly, hoping to keep the follicles alive until I was lower on Pred. I also stopped coloring.

Now at 9.0 I'm becoming hesitantly optimistic that my hair is growing back. It seems thicker at the roots. Maybe, in a few months I'll feel comfortable enough to risk coloring it again.

[Ollanda in reply to Hindags]

That sounds good Fingers crossed, I hope it will stabilize here as well !

[Grammajoy in reply to pmrkitty]

I am so envious of friends with gorgeous white hair. At 79 I have no gray and it costs to keep it blonde so go gray🤑

[BonnyQuine]

Hi Ollanda - I was losing a lot of hair for several months. Started about 6 months after GCA/pred. It's not growing back yet, but it has stopped coming out in such huge quantities. Keeping my fingers crossed.

I'm now on 9mg pred (started on 40mg about a year ago). Cheers.

[Ollanda in reply to BonnyQuine]

Crossing them with you! Hope it will stabilize in my case soon as well!

[GerriMc]

My hair was fine until I started on Methotrexate. It seems to have stabilised, but still loosing more than before. Must try Nioxin.

[christine2715]

I have had hair loss and a hairdresser recommended a silk pilow case which is quite cheap on the net - Amazon I think. When you toss and turn at night on a cotton pillowcase it doesn't help it seems. In any event I rather like the silk pillowcase.

[Ollanda in reply to christine2715]

Thanks I’ll try that!

[SnazzyD]

Hello,

My hair started to fall out just before a cruise holiday when I got to 18mg in August from a starter of 60mg in March. It did it quite suddenly just like when I was on chemo; I could take out tufts. Luckily the painful scalp as the hair follicles died off (I think) I recognised from the chemo and didn't decide my GCA was back! It is very similar but all over. I don't know if it was a delayed reaction to the illness, stress or the Pred. As a nurse, in my experience I've seen skin shedding and hair shedding as a response to deep systemic illness before, but who knows?

Interestingly, after a few days on ship the loss stopped, so I'm a bit thin in patches but the rest has become thicker in the months up to being ill. I think once the hair follicle has decided to give up, there is nothing you can do to stop it losing its hair, but I may be wrong. So, as you can see from the above replies, there are many opinions and experiences!

[Ollanda in reply to SnazzyD]

Yes indeed! very happy to read all the replies!

[Pam47]

I too suffered from thinning hair and a handful of hair in my hands after a shower. I am using Aveda Invati products. They are expensive, but do seem to be making a difference. This could be psychological- it's difficult to know! Can you get these shampoos in the Netherlands?

Pam

[Ollanda in reply to Pam47]

Thanks Pam, I am using them, all three products in the invati line, this is the third set of bottles, but unfortunately no improvement yet...