Colouring Hair: has anyone lost hair when taking... - PMRGCAuk

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Colouring Hair

CavalierKC3 profile image
63 Replies

has anyone lost hair when taking Prednisolone. When it was growing back did you have it coloured. If yes, did the colour take ok & was hair damaged at all by having it coloured. My hairdresser won’t do much to my hair as it’s growing back

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CavalierKC3 profile image
CavalierKC3
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63 Replies
HeronNS profile image
HeronNS

Can't help with the colour thing, but I did get rather thinner hair during peak of pred treatment. After some time at a very low dose it seems to have returned to its former thickness. And difficulty of control.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Many have issues with thinning/loss of hair during their PMR -and have had it coloured without any problem.

But if your hairdresser is unwilling to colour it, they know it’s condition better than we do. ..and maybe is concerned it won’t work.

PMRpro profile image
PMRproAmbassador

Now you have posted - look at the Related Posts, posts about colour and hair loss there.

It very much depends on the person, some lose hair due to PMR/GCA, often about 6 months after it starts. Others lose with pred. Some find it no longer takes up the colour as well - and others have no problems at all. Some lose the curl they had, others develops curls they have never had before.

The condition does change - some talk about brillo pads and frizzy dry hair. But if you have a good hairdresser - listen to her, They can see what it is like far better than you,

CavalierKC3 profile image
CavalierKC3 in reply to PMRpro

Where do I find articles on hair loss. Re growth & colouring

PMRpro profile image
PMRproAmbassador in reply to CavalierKC3

The related posts are to the right on a computer, at the bottom of the page on a phone I think, just scroll down.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to CavalierKC3

FAQs-

healthunlocked.com/pmrgcauk...

piglette profile image
piglette

My hair became like a haystack with the steroids. I had it cut very short. I have been colouring it for years and carried on. If my hairdresser warned me to stop though I definitely would listen.

CavalierKC3 profile image
CavalierKC3 in reply to piglette

Did you lose hair while on steroids., it has grown back

piglette profile image
piglette in reply to CavalierKC3

It was very brittle and broke. My hairdresser says it is much thicker and healthier now I am on a low dose of steroids.

Koalajane profile image
Koalajane

I used to have my hair permed but my hairdresser wouldn’t perm it due to the steroids. I also had breakages

Kendrew profile image
Kendrew

Hi there,

I've been on pred since May 2019 and by two years in, my hair had definitely become thinner.

I'm a natural blonde and been platinum blonde all my life, till age, menopause etc turned it a duller shade of blonde, so I began having hilights to bring it back to a brighter blonde.

Taking steroids can make our skin, nails & hair more fragile and much easier to damage, so I eventually decided to cease having my hair dyed until I felt my hair wasn't so vulnerable. I didn't want to lose any more hair or irritate my scalp.

For the first time ever the hair at the back of my head under the top layer didn't seem to take up the blonde properly. It would go an almost brassy, yellowy/orange tone.

My hair is regaining both strength and volume now I'm on lower doses, so I've just begun to have hilights put in again and so far, so good.

This is obviously my own personal experience and will be different to others.

Your experience will be unique to you and everything mIght well be ok, but you have to be mindful of the fact that there may be potential consequences

which unfortunately you won't know about until you have it done!

Good luck.

CavalierKC3 profile image
CavalierKC3 in reply to Kendrew

I will soon be down to 5mg. How low were you when you had highlights again

PMRpro profile image
PMRproAmbassador in reply to CavalierKC3

Bear in mind how long hair takes to grow out - the ends were created at the higher doses.

Kendrew profile image
Kendrew in reply to CavalierKC3

I had my first hilights again two months ago and I was on3½mgs.

SheffieldJane profile image
SheffieldJane

My hairdresser did a few low lights and highlights to add an illusion of fullness to my mostly white hair. It is a nice shade of blonde now and I haven’t had it coloured for months. I didn’t notice any ill effects from that amount of colour. An occasional head massage with Rosemary essential oil , mixed with coconut oil is an treat that gives it bounce. It has improved a lot over the years. I was even looking at wigs at one point.

agingfeminist profile image
agingfeminist

I lost about two thirds of my hair very suddenly when I was down to about 10 mg. Came out in handfuls (about 2years ago). But I notice that is has grown back over the past 6 months ( 3 mg). All hair dry and coarse. Still wear colorful head scarves. I have always embraced my natural greying hair...so no experience coloring it. But amazed that it has grown back.

Jbobby profile image
Jbobby in reply to agingfeminist

This is encouraging. I’m down to 12.5 mg ( been in Pred since Jan 2023). Hair falling out in handfuls. Like you, I’ve def lost two thirds of what I had. Really demoralising. Wondering if it’s more the GCA or the Pred.. Also wonder what your reduction prog was. I’m intending to go to 10mg soon (after blood test for inflammatory markers) and then down by 1mg each month… and when did you start noticing improvement in hair?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Jbobby

GCA or Pred?

Probably a bit of both — and it takes time after an illness for it to recover…

..and don’t be in too much of a rush to reduce the Pred.

Jbobby profile image
Jbobby in reply to DorsetLady

Thank you DL. I'll try and be patient and take it slowly...

agingfeminist profile image
agingfeminist in reply to Jbobby

I was hoping someone would find it encouraging. I was diagnosed with PMR and GCA in December 2019. It has taken almost 4 years to get down from 60mg to 3 mg. The lower the dose the slower I go. I don't ever look at blood markers ....I taper according to symptoms. I noticed some regrowth when I was on 3.5mg...a few months ago.

I have to admit I didn't follow the return of hair growth very carefully. I asumed it would never grow back. I am not very hair focussed (I have never been to a hairdresser).

I wash it once a week and don't use a hairdryer.

BTW I also have severe steroid induced muscle myopathy, and there is no guarantee that will improve (even when off steroids). But now I feel slightly more optimistic. If hair follicles can recover from the steorids then maybe so can muscle cells....

Jbobby profile image
Jbobby in reply to agingfeminist

Thanks so much AF. You've clearly been very wise in how you've lowered your dose which is def the best way to go. I'm trying to rein in my impatience. I'm finding I have very slight symptoms - occasional flashes of pain in temple area (GCA) and faint jaw claudication. But very intermittent. Still, I suppose I have to pay attention to them...

I really hope you get improvement on muscle cells. As you say, if hair follicles can recover form the onslaught of Pred there's a good chance muscle cells can too...All good wishes to you.

agingfeminist profile image
agingfeminist in reply to Jbobby

you touched on something i have also found problematic...flashes of sever temple pain...I take a couple of paracetomol and if it doesn't cleat up...take an extra 5 mg of steorids for a couple of days...fortunately it has always deisappeared promptly with the steroid boost. But when I get the pain, I m really holding my breath...sometimes there is also a fleeting visual disturbance...It has only happened 2 or 3 times...but I think if it lasted over an hour or deteriorated at all I would be in A and E.

In fact, since my first scary episode, I have a small hospital bag packed...just in case. Feels a bit nutty but I think I find it reassuring. and the best of wishes to you too

Jbobby profile image
Jbobby in reply to agingfeminist

Thank you AF. I’ll try paracetamol. And also interested that your two day boost of 5mg Pred can help. I’ve never done that but perhaps I’m getting to a level where things are becoming more problematic and I’ll need to do that now as I lower dose .

Your hospital bag sounds sensible although a little alarming. I hadn’t foreseen getting to that drastic a point but I guess it’s possible….

Did your first scary episode land you in hospital?

agingfeminist profile image
agingfeminist in reply to Jbobby

Yep my first scary episode had me admitted for a week. I have on a few occasions wished that DL and PMRpro were by my side to whisper sane words.

The awful visual disturbances have only happened three times in the past 4 years...the first was really alarming (soon after diagnosed with PMR)and that was when I was admitted to hospital (though I really doubt they needed to keep me there a whole week).

I do feel the hospital bag is a bit OTT but the first episode was so awful and it was almost impossible to pack a bag because I couldn't see properly in one eye...and I was in panic. My doctor (who I managed to speak to on the phone) ordered an ambulance!

I have been sent off to hospital on 2 other occasions by my GP...for cellulitis and a cat scratch which looked angry (the scratch not the cat)...but was tretaed as an outpatient on both occasions (turning up for daily IV antibiotics) . But I had my bag with me!

I didn't discover this forum until a little later. But for over 3 years I have read it every morning, with my coffee, before I begin work (online). It helps keep me (almost) sane.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to agingfeminist

It’s easy [or at least easier] to offer sane words when it’s not happening to you…bu thanks for comments.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Jbobby

I'm finding I have very slight symptoms - occasional flashes of pain in temple area (GCA) and faint jaw claudication. But very intermittent. Still, I suppose I have to pay attention to them...

Yes you do have to pay attention.... don't be paranoid, but do monitor...

a. to see if there is a pattern, and

b.to see if they increase in intensity or regularity...if so then you need advice asap.

Jbobby profile image
Jbobby in reply to DorsetLady

Thank you DL. That’s useful advice. . However my rheumy didn’t seem too bothered by my reports , so long as CRO and ESR were ok. I am trying for appointment for blood test…. Not sure he’s right.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Jbobby

No I’m not sure he’s right either.. so just monitor for your own peace of mind.

Jbobby profile image
Jbobby in reply to DorsetLady

Ok. Thanks DL.

PMRpro profile image
PMRproAmbassador in reply to Jbobby

The CRP and ESR will only rise at this stage if there is enough inflammation for long enough to trigger the liver to produce the marker proteins. And in some people on just enough pred they just don't rise even though the disease is active, Something some rheumies appear to not know is that the disease can continue being active and causing inflammatory effects even while patients are on Actemra which leaves the CRP and ESR at very low levels. Markers are only a guide, symptoms ALWAYS trump lab results, with and without Actemra.

Jbobby profile image
Jbobby in reply to PMRpro

Interesting. thank you PMRpro. WHY don't the rheumies take this into account I ask myself....?

PMRpro profile image
PMRproAmbassador in reply to Jbobby

It is part of the finer points I suppose - even a lot of rheumies don't get beyond the basics!

Jbobby profile image
Jbobby in reply to PMRpro

I'll say!

agingfeminist profile image
agingfeminist in reply to DorsetLady

Thank you DL. Sometimes I do try to think "what would DL and PMRpro say?" To take more or not?

This journey does require a calm and steady approach. I am still learning that!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to agingfeminist

Not easy to do calm and steady when you’re in the throes of a dilemma…but probably had more practice than I would have liked in the past. 🌸

PMRpro profile image
PMRproAmbassador in reply to Jbobby

If there is ANY sign of jaw claudication you really need to take close notice because that is one of the major red flags.

Jbobby profile image
Jbobby in reply to PMRpro

Thank you PMR Pro. OK. I’ll pay close attention .

Daffodilia profile image
Daffodilia

Hair got thinner and hairdresser commented when it came back so guess it is better to wait - I don’t colour mine

Pr0jection profile image
Pr0jection

I was a bit nervous the first time I had highlights after being on 15mg prednisolone for about 4 weeks but needn't have worried. It all went according to plan. Around the same time I started taking a biotin supplement so any thinning/hair loss wasn't noticeable. In fact, after a further 4 months my hairdresser noticed new hair growth.

LMali profile image
LMali

I was diagnosed in July 2020 with PMR and as part of covid lockdown fun I had cut my own hair already. It never really grew back to any length - it would get matted and brittle and seemed to be thinning more, so I decided to just keep it shorter so I could maintain condition. I read that condition of hair is contributed to by scalp health so whenever I washed my hair I massaged my scalp to stimulate blood flow. As I have lowered my dose of pred, I feel that my hair has thickened up again. I decided last year to "embrace the gray"! I felt that adding chemicals to my hair every six weeks probably wasn't helping its condition. It is definitely in better condition now. At it's worst, I was worried it was thinning out altogether. Having always had a good head of curly / wavy hair I found this extremely demoralising. So for me, focussing on the condition of the hair was more important than keeping it coloured. Sounds like your hairdresser may be having the same thought?

Helipad profile image
Helipad

My hair has now changed completely. I used to have fine straight hair and I now have thick wavy hair which no longer gets greasy. I no longer have to blow dry my hair and can wash it once a week. All very strange

Viveka profile image
Viveka

Mine got very thin. Then came back brillo. Now looking pretty good. I dyed it throughout myself with a semi permanent 24 week dye. No problems - though I go dark so use minimum bleach in product - is that the issue?

musicality profile image
musicality

Yes had hair loss/thinning of strands. But other meds can cause, e.g. Ompeprazole. Stopped colour during Covid. Now using coloured mousse available in various colours - just washes out. Mix it with ordinary mousse 50/50 if colour 2 intense. Happy colouring!

musicality profile image
musicality in reply to musicality

Sorry meant Omeprazole. Guess u knew what I meant unless u haven't taken it!

Rynn33 profile image
Rynn33

maybe ask another hairdresser for a second opinion- mine which is naturally white now has got thinner and coarser on the Pred/PMR but my hairdresser has coloured it every 4-6 weeks but gave me a non-sulphate volume building shampoo conditioner and has done moisture treatments on it to help with the brittleness.

Everett19 profile image
Everett19

Definitely hair loss and almost bald on crown. It is growing back but very slowly and very frizzy. Do have it coloured which takes ok although hairdresser wouldn't do highlights last time because of hair condition.

9lives profile image
9lives

Hi , yes my hair got quite thin at one point and very dry. I used to have this bold patch at the back of my head!!

My hairdresser puts a treatment on each time which helped. Now I’m on 1-2 mg it’s got much thicker. I tend to put some oil on after washing and that keeps it under control as it can be a bit wild.

PMR2011 profile image
PMR2011

Mine hair got very brittle and thin after GCA diagnosis while in higher dose steroids. I also stopped coloring it during Covid. Fast forward 2 years, I came off Steroids (on Actemra) and kept natural color, and so glad I did! It’s easier, cheaper and definitely healthier. And I actually love the gray. Personal choice.

singingloud profile image
singingloud

Before pmr I had very thick hair but within four months it began to fall out in the winter of 2019 &2020. Of course there were no appointments during 2020 so it grew out but was wirey. When I saw my hairdresser she would only color it but no foils of lighter hair.

Now I have a new hairdresser with my thick hair back and she does it all.

Two hairdressers with two different opinions. I would say be gentle with it till you get back close to what you had before. Good luck.

Amkoffee profile image
Amkoffee

Years before PMR I developed alopecia areata. When the hair came in, it came snow white. My hair is dark brown. It looked a bit like a skunk. However given enough time that white hair turned to my natural hair color. If that is what you are seeing then I suggest giving it time to change all on it's own.

CavalierKC3 profile image
CavalierKC3 in reply to Amkoffee

No I’m 78. Hair grey. Have had it coloured /highlighted for years. But on steroids & fact I lost some hairdresser doesn’t want to colour it now

Mandyq profile image
Mandyq

Hi - I had the same problem. I’d always had thick hair, which took highlights and colours really well. My hairdresser loved me! I was really shocked when I noticed it thinning and felt this just added to my woes / depression associated with PMR.

My hairdresser suggested a 1) don’t wash your hair too often, 2) use a good quality shampoo and 3) try a wash out hair colour mousse called - Indola- you can get it on line in about 14 colours, costs about £12 and lasts a long time on short to medium length hair. I checked reviews on line and took the plunge. I stick to a colour fairly near my own mucky grey - so that it’s not too dramatic. My hair is starting to thicken up again anyway as I reduce the pred but the mousse has been really good. Lifted the colour and my mood - I’d definitely recommend

Mandy Q

Pandora2 profile image
Pandora2

Hi Cavalier…Yes I lost a lot of hair for quite some time whilst using Pred. The loss seams to have tapered off now. I have always been my own hairdresser and have continued with the shampoo - in colourants right through the whole thing with no trouble at all. My hair is naturally colourless now so I just use a pale blonde colourant. Good luck. X

Gail10US profile image
Gail10US

I have had not problems with color and was told by my dermatologist that color will NOT hurt the hair.

I did have alopecia during a flare of PMR. Going to a higher dose of Prednisone actually brought down the flare and my hair started growing back. The dermatologist also advised me to use men's Rogain on the spots where I lost hair. It all came back.

PMRpro profile image
PMRproAmbassador in reply to Gail10US

"and was told by my dermatologist that color will NOT hurt the hair."

No, it probably won't - but there have been people who found that it didn't "take" as it had done previously. I think everyone has to try and see how it goes.

Gail10US profile image
Gail10US in reply to PMRpro

Most importantly, for me anyway, was the realization that a flare causes hair loss for me...and a higher dose of prednisone is actually the remedy. I am on very low does to begin with, however (under 5 mg). But when I would have a bad flare, I could actually feel my hair hurting at the roots. It would hurt to move the hair from one side to the other in the places where I was losing it.

PMRpro profile image
PMRproAmbassador in reply to Gail10US

Very GCA-ish!!!

Gail10US profile image
Gail10US in reply to PMRpro

It wasn't. I saw my doctor. The sensitivity was not at all near the temples or near the temporal arteries. It was in other areas of the scalp. Ended up losing patches of hair where it was tender. It was alopecia - which is also autoimmune and in my case seemed to be triggered during a flare.

PMRpro profile image
PMRproAmbassador in reply to Gail10US

I accept it may not have been but scalp pain is a recognised GCA characteristic. GCA is not only in the temporal arteries, may not even be in the temporal arteries. Loss of vision is associated with GCA affecting the ophthalmic artery supplying the optic nerve. Too many think it MUST be the temporal artery - unfortunately not so simple. Scalp pain is due to vasculitis in the blood supply to the scalp itself.

Gail10US profile image
Gail10US in reply to PMRpro

Good to know in case it happens again.

BLUEPMR profile image
BLUEPMR

I can't cope with chemicals due to multiple allergies so I've used Nature Tint for about twenty years no fumes no chemicals leaves hair shiny and conditioned. This may be a safer option. Available on Amazon.

Singr profile image
Singr

Yes I was losing hair and what remained was thinning. When I did have my hair coloured it was turning out weird shades even with the same colour.

Hunter134 profile image
Hunter134

I lost a lot of hair so I chose to go natural.Iam actually liking it.Just a few more inches cut off from dying it.Owning my age.lol

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