Hair loss: I wrote a few months ago regarding my... - PMRGCAuk

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Hair loss

Creamtea
Creamtea

I wrote a few months ago regarding my hair loss due to possibly steroids or Leflunamide or both. I am now pleased to say that i have now reduced the prednisolone to 6mg and Leflunamide 20mg weekly and my hair has stopped falling out. It has become thicker also. I thought that it might help other sufferers to know how I have been treating this problem. Firstly I have been using a non frizzy shampoo and conditioner and also I have been massaging my head daily by running both hands from front to back quite firmly then taking clumps of my hair and pulling them and finally giving my head a good hard brush. I feel that this has helped and made me feel better about myself. Its still a bit frizzy and grey (due to the lockdown and not being able to go to the hairdressers. ) Is it advisable to colour your hair when on steroids?

40 Replies
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PMRpro
PMRproAmbassador

Depends a bit on the effect of pred on your hair - I know a few people who found it didn't "take" and the colour varied a bit.

Creamtea
Creamtea in reply to PMRpro

Thank you. Ill have a go. Im not going anywhere as in Lockdown so no one will see me if it comes out wrong.

Oh that's reassuring, glad it working for you.

I've lost about a third of my hair especially at the front and it's not slowing down. Hoping that as the meds drop it will recover. It's such a big thing hair loss!

Re colour, I wouldn't have thought it would matter so keen to see the general consensus.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Doesn't make a lot of difference. The strands of hair being coloured are dead anyway, enough thought the change in shampoos might make them easier to control. The reason why the steroids affect is because they affect the hair follicle from inside your body, colouring doesn't, but I would get it done professionally - if you can that is!

JGBH
JGBH in reply to DorsetLady

I didn’t know steroids affect hair growth etc. I now understand why I have been losing so much hair. Thank you for this information.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to JGBH

Don't blame the Pred entirely - stress and illness can also affect your hair quite dramatically.

JGBH
JGBH in reply to DorsetLady

Yes, this is true. I am also hypothyroid following removal of my thyroid gland (papillary adenocarcinoma in 1980). I was only put on levothyroxine (T4) when in fact I should have been put on liothyronine (T3). I wasn’t converting T4 into most important T3 so I stared losing so much hair and feeling so ill. I was eventually put on a combination therapy of T4/T3 and my hair stopped falling and started growing again until a few months ago when it has stared falling again. Have been on prednisolone for 2 years and 3 months, trying to reduce but it’s so difficult. Of course I have other health issues and feel quite stressed, so this can’t help.

PMRpro
PMRproAmbassador in reply to JGBH

How do they monitor your thyroid problems? Pred suppresses TSH so it may look fine when in fact it isn't.

JGBH
JGBH in reply to PMRpro

A test from time to time. Testing only for TSH is not enough. Luckily I get tested for Free T4 and Free T3. Since I have added the T3 my level has increased into a better range and my T4 level has decreased a little as expected. My TSH is very low, I suspect it’s because of the steroids. However the endocrinologist is ok about this. Always best to have a low TSH when there has been cancer apparently.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to JGBH

Both my brothers had same operation - fortunately my mother noticed my overactive thyroid very early days when I was about 18 - and I got away with radium treatment.

JGBH
JGBH in reply to DorsetLady

So thyroid problems must be running in your family! Was your mother alright? It could be due to the quality of the food we have and pollution perhaps.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to JGBH

Mum was fine - but I think there was a great aunt on maternal side that had problems. Both brothers were older than me by 11& 14 years - they were born before WW2, me after - so not sure! Doesn’t seem to be in younger generation.

JGBH
JGBH in reply to DorsetLady

That’s interesting. Must be a genetic link. No one in my family had any thyroid related problems. I know quite a few young people who have thyroid related problems and don’t get a decent diagnosis nor help.

They self medicate and in some cases it has been helpful but really they need the support of so called medical professionals. Unfortunately most endocrinologists only seem to know about diabetes.

PMRpro
PMRproAmbassador in reply to JGBH

So can PMR/GCA - the vasculitis and systemic illness is reflected in your hair, often a few months after you were ill.

JGBH
JGBH in reply to PMRpro

Thank you for this information too. I have been asking my gp and rheumatologist whether there is a possibility that I have a form of vasculitis or PMR. They don’t seem to bother, hiding behind the fact I have RA... the pain in my arms, elbows, hips etc are so debilitating. I don’t know what to do about this now. It’s disheartening having to fight for help all the time especially when one feels so unwell. How was your PMR diagnose?

PMRpro
PMRproAmbassador in reply to JGBH

I think almost all patients with an autoimmune disorder have something of a fight on their hands! I went to the GP over a period of 5 years before I eventually worked out what it was myself - the forum didn't exist then and google wasn't very good at finding PMR from symptoms! I had seen a rheumy - who informed me I had OA - by feel, not even an x-ray - and an MSK specialist (just a physio with an extra bit of paper) - who said there couldn't be anything wrong with my back as I could touch my toes and he couldn't. The second rheumy wanted it to be anything but PMR despite a miraculous response to 15mg in under 6 hours. But eventually I found another GP who knew about PMR and provided the pred.

JGBH
JGBH in reply to PMRpro

Indeed I had to fight since my late 30s (am 74 now) to get any help whatsoever. They couldn’t even diagnose RA when I was in utter agony, couldn’t move and all my joints ere swollen like balloons. I had to be admitted into hospital after I fainted and I remained on that ward for a year! I nearly died several times. It was scary and the pain incredible. They eventually diagnosed sero negative RA. They had someone coming up from a London hospital to see me because I was so ill.You have been lucky in finding a gp who actually knew about PMR.

PMRpro
PMRproAmbassador in reply to JGBH

I hadn't seen her before as she was part time and repeatedly on maty leave! But she knew what PMR was - and how to use google for diagnosis as she later taught the dear boy who missed my PMR for 5 years. When I left the practice I asked if he could now recognise PMR and even more, GCA and what should he do: "high dose pred and pray"! I think that was a result ...

JGBH
JGBH in reply to PMRpro

That was lucky indeed to fall on such a gp! So good she taught the ignorant doctor how to recognise the symptoms too. Good work there.

PMRpro
PMRproAmbassador in reply to JGBH

I'm lucky here too - the GP was a rheumy in an earlier life ;)

JGBH
JGBH in reply to PMRpro

You’re very lucky indeed! Where are you? I might move...

Jan_Noack
Jan_Noack in reply to JGBH

wow. sorry to hear what you went thru.

JGBH
JGBH in reply to Jan_Noack

Thank you. Unfortunately many people find themselves in that situation. It should not happen.

Lauterbach
Lauterbach in reply to JGBH

Judging by other's responses I think I've been very lucky. I was at the Doc's about something else entirely, when I asked him if I could also ask about my "muscle strain" (taking 2 mins to turn over in bed as my arms were so painful) as well (well that's what I thought it was at the time never having heard of PMR). The Doc stopped me part way through my spiel and asked 2 questions: did it come on overnight and did I have unintentional weight loss. After answering yes to both, there I was on 20Mg of Pred/day and blissful relief.

JGBH
JGBH in reply to Lauterbach

Indeed you were lucky to have a gp who was aware of PMR. Not the norm.

Glad your hair has improved. So far mine is OK on 7.5mg but I'm taking a biotin supplement along with Calcium and Vit D. With regard to colouring your hair, I've continued to have highlights throughout the time I've been on prednisolone (nearly 5 months) with no ill effects, but I've stopped washing my hair daily and now do it every 2/3 days.

I've found that above 10mg my hair thins and breaks easily. As a natural blonde all my life, after the menopause I went from a natural platinum blonde to a honey blonde so I decided to get my hairdresser to 'blonde me up' to platinum again. She regular does a patch test to make sure nothing has changed and my scalp won't react adversely to the dye and although I've had no serious issues, I have found the colour has to be lighter to avoid a subtle orangey hue that can sometimes be seen in the naturally darker hair underneath. Weirdly....as my scalp hair thinned, the hair on my arms and legs increased! Don't misunderstand me......I don't mean I looked like a werewolf, but there was definitely more of it and I developed 'peach fuzz' fine hair on my face. As I'm blonde, none of this was particularly noticeable to others, but would have been had I had dark hair.

This has always rectified itself when back to lower doses.

kalimche
kalimche in reply to Kendrew

"Peach fuzz" fine hairs on my face - I too have recently noticed this on the side of face, above the jaw over to my ear, and maybe worse on one side (unless this is to do with the direction of the light?)Is this also common with PMR/Pred?

Kendrew
Kendrew in reply to kalimche

That's a good description of what I've experienced in terms of location. Yes, I do believe it's linked to the steroid medication.

kalimche
kalimche in reply to Kendrew

Tx! Had never occurred to me before - was putting it down to aging (along with the increasing number of chin hairs!)

Kendrew
Kendrew in reply to kalimche

Haha!😂 made me laugh.

PMRpro
PMRproAmbassador in reply to kalimche

Yes - very common with pred.

Hello, glad to hear that your hair loss problem is resolving. I have coloured my hair throughout my PMR/GCA journey, even when on 60 mg /day pred. To counter the frizz I used a gentle shampoo and conditioner (Liz Erle) that was recommended by one of the oncology nurses who applied the cold cap used when I was undergoing chemo, 12 months after my PMR diagnosis. I was also told to be very gentle when brushing or combing my hair and to put on a deep conditioning treatment when needed. However, everyone's hair is different and it may require trial and error to see what works best for each individual.

Kendrew
Kendrew in reply to Heron82

I also had the Liz Earle shampoo and conditioner recommended and its lovely. Very gentle, smells gorgeous and leaves my hair feeling soft, but with some volume. Its expensive but you really don't need much and so lasts ages. I hope you're doing well now feeling ok.

Good morning Creamtea, I had really thick, curly and unruly hair which was blonde (bottle). When I was on a much higher dose of pred 15 to about 8 mg it fell out in clumps and mostly at the front. It also went much straighter. So I bit the bullet and had it cut into a short bob and coloured it brown (see avatar). I had loads of compliments and have kept it in this style since. My only problem now is I am currently down to 2mg and with each reduction my hair has got stronger and much more like it's old self so now I'm paying several hundred pounds every four months or so for a Brazilian blow dry! I have softend the colour a bit (dark blonde) and have my roots done every three weeks. I have had no problems at all with colouring it. I hope you find a solution to your problem. I think that even if you feel rubbish you still want to look good. Good luck I hope, like me as you reduce you will get back your 'crowning glory' 👑

How exciting to learn someone else takes both Leflunomide and steroids! When I mentioned it on this site a year ago, many wrote less than enthusiastic comments about Leflunomide. However, I'm now down to 6 mg. steroid and 20 Leflunomide, feeling good so far and my hair DID all come back in and is thick --though my hair has always been short and thick prior to the steroids. Good luck to you!

You can certainly colour your hair while on steroids. I’ve use semi-permanent and permanent colour, as well as trying a “colour mask” (purple) that contains no peroxide and fades out.

While on pred I’ve also gotten a few intense conditioning treatments at the salon which helps the consistency of my hair. I also take biotin daily and my hair has been growing at a record rate!

Lastly I will add that I only wash my hair about once every 10 days or so, gentle brush each day, and very rarely blow dry with the brush anymore as my scalp is sometimes tender and it really does pull out more hair in the process. Instead I let it air dry naturally and use a pic afterwards.

So glad your hair is coming back in! As someone who grew up in a hairdressing family, I know how important our hair is to our overall perception of ourselves.

Creamtea
Creamtea in reply to PMRCanada

Thank you. yes will hit the bottle (dye) and give my hair a treat for Christmas.Hopefully it will make my hair feel softer and give me a lift

You are right on. My Rheumy tried to say it was just the illness (Not the Pred)........sorry! The Pred is the culprit from TOO MANY reports. I couldn't stand the tufts that started, so had my hairdresser scalp me!! Literally. Have never had short hair, ever, so didn't recognize myself in the mirror. :-) However, as you said, starting to come in thick again. Hairdresser says that he has many clients that suffered this way too. Especially if you are/were on high doses, which I was initially. Anyway, enjoy the new hairdo! Dorset Lady is right about colouring etc.

I have very thick hair on my head and did have clumps coming out until I got down to 8 ish pred. Certainly does not stop the beard/moustache growth! Got lazy about it wearing mask when out but not for local walks. Got a sight of myself in sunshine (rare enough) and shocked into piling the chemicals on. Hate it, hate it.

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