hair loss during treatment : morning folks , Just... - PMRGCAuk

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hair loss during treatment

Pastamama profile image
32 Replies

morning folks ,

Just read various posts about hair loss , so on that theme …

Wondering if anyone out there has a recommendation for particular shampoos whilst taking pred ? I’ve tried to research this and invariably steroid shampoos come up !

Tricky question I know as we all have very different hair but crossed my mind there may be products out there that are medication friendly .Guess the same goes for skincare too ?? Any thoughts 💭….

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Pastamama profile image
Pastamama
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32 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Have you read through the FAQs… I’m sure in the info there, you’ll find some suggestions on shampoos etc…

.. but sure others will be along ..

Pastamama profile image
Pastamama in reply toDorsetLady

No I haven’t , take it that’s the PMR FAQ’s ? Thanks for info .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPastamama

Yes - meant to link them- sorry -

healthunlocked.com/pmrgcauk...

Pastamama profile image
Pastamama in reply toDorsetLady

No probs , thank you

SnazzyD profile image
SnazzyD

Hair loss is common after any severe systemic upset. Mine nearly all fell out 5 months after GCA kicked off after Pred initially made it thick and lovely. It all grew back with nothing special. Along the way it shed to a greater or lesser degree depending on how I was or had phases of being quite different to my normal. The second most intense shedding was during a period of low adrenal function on low doses of Pred. My message is that if you don’t find the elixir, it isn’t necessarily a disaster.

darkred profile image
darkred in reply toSnazzyD

Snazzy D, I am now coping with low adrenal function due to low pred and noticing a marked increase in hair loss. (Also, my shingles symptoms have persisted for 4 months.) Have lost 16 lbs. since my PMR diagnosis one year ago. My weight loss has been due to a variety of things -- no need to expand on that. I do not look good as a super skinny person, though I'm now able to wear some skinny clothes (untouched in my closet for years). I'm sure much of my weight loss is muscle loss. A fractured clavicle has now healed so I need to discipline myself to gently get back to strength training. I have a DVD by Priscilla Patrick and need to do some of her recommendations. (Priscilla kept me in shape for well over 20 years -- now just a memory.)

As for hair loss, I do avoid sulfates -- my present shampoo has other sudsing ingredients. It is Mill Creek Botanicals keratin repair shampoo. The scent is not overpowering, which I like. Vegan, paraben free, sulfate free. Not expensive (a plus). Made in the USA.

I used to be more "religious" with taking vitamins and minerals, so I'm sure that is also a factor in my hair loss. Also, my protein intake is inadequate, surely a factor. When my OH was alive and still healthy, I made eggs every other day -- now I rarely do. Eggs are rich in nutrients for healthy hair.

I doubt I will ever again have anything close to luxurious hair, but I will be happy as long as I don't find bald patches.

darkred profile image
darkred in reply todarkred

Well, I just looked at amazon and some people do not like the shampoo I suggested. I got my shampoo from a grocery store. I notice that commenters at amazon often say the formula is different when sold at amazon. Also, as PMRpro says, "I don't think there is a one-size fits all solution."

I should add that I also use the Mill Creek Keratin Repair Formula Conditioner. I always read the ingredients of anything I buy, and I found Mill Creek has impressive ingredients.

Some very costly shampoos bank on the brand only, and the list of ingredients do not warrant the high price.

PMRpro profile image
PMRproAmbassador

I don't think there is a one-size-fits-all solution to be honest. It will depend on what pred does to YOUR hair - mine is dry and very wavy again and has grown very very thick. What has helped me most is to increase the intervals between washing - even the most expensive shampoo for dry hair is useless. Now I wash it every 4 or 5 weeks at most. I look a bit like Crystal Tips (except it is white not purple) but I am stopped in the street for people to compliment me on my hair!!!

Pastamama profile image
Pastamama in reply toPMRpro

Thank you for responses ladies . Liking the image of your hair PMRpro . If my hair does the same as yours I have an Alistair already 😁

PMRpro profile image
PMRproAmbassador in reply toPastamama

No, no Alistair here.

Pastamama profile image
Pastamama in reply toPMRpro

😆

darkred profile image
darkred in reply toPMRpro

Your hair sounds gorgeous. Just what I want!

PMRpro profile image
PMRproAmbassador in reply todarkred

It is very cheap to run - a trim now and again and no colour - shining white!!!

Bleakley1 profile image
Bleakley1

I had the same problem around the time of taking 15mg of Pred. Different shampoos did not help me but what did was using a shower comb to avoid pulling too much hair out but the big saving grace was taking a folic acid tablet every day.

I checked with GP first and he said fine it was ok. It’s not a quick fix. It took several months to work but it did. My hair is back to normal and the bonus is that my nails grow so quick and are much stronger.

As you reduce pred too I think the hair loss diminishes. I still take folic acid too this day even though I am now on 6mg pred. Hope this helps.

Pastamama profile image
Pastamama in reply toBleakley1

Thank you all . Will ask about the folic acid

Satya70 profile image
Satya70

I think that what’s helped most has been Hsn-p-1000 capsules and turmeric capsules. I use a special shampoo and conditioner by Keune but I’m not sure that’s made a difference. I only wash my hair twice (sometimes once) a week and only pat it dry.

Broseley profile image
Broseley

My hair has got so thin. I used to be like Crystal Tips. Now, especially at the front, it's thin, wispy and frizzy and fly away. I can brush it and 5 minutes later it looks like it hasn't been brushed for a week. The slightest breeze makes me look like I've gone through a hedge backwards. I don't think it's related to pred as I'm down to 1mg. It started around the menopause. I've tried folic acid (still take it), biotin, numerous hair products, not washing it more than once a week etc. Nothing has worked.

sidra1968 profile image
sidra1968 in reply toBroseley

Me, too. Haven't tried any possible remedies though. Will try folic acid, I guess.

Jbobby profile image
Jbobby

I started Pred just over a year ago. Have been coming down from 70mg for GCA. Now down to 10mg . My hair started tumbling out about 8months ago - a whole birds nest of hair Wd be dragged out by my hairbrush each morning until it was very scarce and thin. Then suddenly - about 2 months ago - new ‘baby hair’ started appearing and the previous massive loss reduced. I’d meantime added Biotin to my supplement intake and VitB12 etc. Initially , when I started pred, I’d taken 5 or 6 doses of oral Alendronic Acid which I then stopped as I cdnt tolerate it. I’m now wondering if that was the culprit more than the Pred as I’ve read that it can cause extensive hair loss by blocking certain things. ( I expect PMRpro Wd know info/ details of this). Anyway I’m reluctant to agree to AA again as a result coz I can’t bear thought of that loss recurring. It was demoralising along with other side effects of Pred etc. I don’t know if you’re on AA, but I can anyway recommend Biotin and Folic Acid. Best wishes.

PMRpro profile image
PMRproAmbassador in reply toJbobby

That sounds as if the hairloss was about 6 months after the GCA appeared? It is very common for serious systemic illness to result in hair loss and cranial GCA in particular is often associated with poor blood flow to the scalp and hair follicles adding to the effect.

Jbobby profile image
Jbobby in reply toPMRpro

Thank you PMRoro. Yes I think it was about 6months after GCA appeared so that wd make sense. So not necessarily anything to do with AA then….? (Sorry for delay in response… strangely, for the last 2 or 3 days my emails from HU have decided to go into junk… )

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toJbobby

Hair loss definitely related to illness … as PMRpro explained can take about 6 months to have an effect. My mother was a hairdresser… and always knew by her clients hair if they had an illness…

HU post? Sometimes happens… has your internet or device been update lately? Have you marked emails as not spam and indentified HU as a safe sender so it doesn’t continue to happen?

Jbobby profile image
Jbobby in reply toDorsetLady

Thank you DL. Very Interesting re your mother’s experience. Am sure hair is a good indicator of health. Will check internet stuff. Am SOOOO unteccy! Drives me crazy but I’ll do my best.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toJbobby

Simple explanation (well simply-ish!) anything goes wrong on forum -

healthunlocked.com/pmrgcauk...

Jbobby profile image
Jbobby in reply toDorsetLady

😃 many thanks DL!

RachelJDH profile image
RachelJDH

I have suffered from intermittent hair loss since having PMR. Probably the Pred? My daughter bought me some Nioxin shampoo and conditioner and my hair loss did reduce but I cannot say it was definitely the Nioxin. I was at a 10mg dose of pred and my husband was ill so stress doesn't help. Worse was my hair went curly and a bit fragile for a while. That seems to have grown out now. Amazon sells it. It is depressing when your hair is not great butyou really feel better when it recovers. Hope you find this helpful. Xxxxp

Pastamama profile image
Pastamama in reply toRachelJDH

Many thanks 🙏

Booch profile image
Booch

I started taking 40 mg Pred June - end of Aug my hair started shedding. Been taking high dose of Biotin, Collagen powder daily and using Routine shampoo (which I swear by) and treating it gently only washing 2 times a week. I just colored this week after 6 months. Growing in very curly - always had wavy thick hair. Lots of baby hairs at hairline which is a challenge but it is growing! FYI I am down to 3.5 mg Pred tapering .5 once a month.

PMRpro profile image
PMRproAmbassador in reply toBooch

That doesn't mean it was the pred though - it could equally well have been the illness as it is typically 2 or 3 months later the effect is seen.

Paperroses profile image
Paperroses

I lost a lot of hair at the beginning of PMR. It came back in dry and frizzy curly. I've always had straight hair. Ha. I learned that because the hair changed I needed to use Sulphate free shampoo. I also use a creme rinse and an additional creme on my wet hair. It now is long and wavy curly and shiny and healthy and doesn't break like it used too. I will be 75 in June and my hair is mostly its original dark color although I'm seeing more white strands creeping in. I also take women's vitamins that contain biotin. I'm currently at 3 mg prednisone after 5 years and gradually will try another taper.

Pastamama profile image
Pastamama in reply toPaperroses

Noted , thank you

darkred profile image
darkred in reply toPaperroses

Your hair sounds beautiful. Happy for you!

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