Losing my hair

[bookbear68]

Hi

Anyone losing their hair on prednisolone??

[DorsetLady PMRGCAuk volunteer]

Now you have asked, you will plenty of related posts - but it may not all be due to the Pred, sometimes it’s the fact you have an illness… but as you have nothing on your bio to say when diagnosed it a bit difficult to say.

Have a look at this link from FAQs -

healthunlocked.com/pmrgcauk...

[bookbear68 in reply to DorsetLady]

was diagnosed 3 months ago and have been on pred since then. Hair has stopped growing and when hair dresser came yesterday she said is is half the thickness it was three months ago. After my second hip surgery this time last year my hair came out in chunks but I assumed that was trauma and it grew back. This is strange. I'm not vain at all but have always had a fear of losing my hair not sure I could cope with that

[DorsetLady PMRGCAuk volunteer in reply to bookbear68]

Pred certainly does change the consistency of hair- but it very often loses its “oomph” from any illness.. as you discovered last year.

With Pred it’s rare to lose it completely -but the thinning is often referred to on here..and agree it can be upsetting.

If you have a look through posts you’ll find what has helped other members - and do discuss with your hairdresser -they can help at lot..

[bookbear68 in reply to DorsetLady]

Thank you it wasn't something I expected but hairdresser has come up with a good short style to help. Think I may take up wild brightly coloured hats. Finding the forum very useful and good to know I am not the only one who finds these conditions such a roller coaster.

[DorsetLady PMRGCAuk volunteer in reply to bookbear68]

Hats are a good idea - if you can wear them! I always see ones I like and then try them on and think “nah, not me” more’s the pity…☹️

[Frewen1 in reply to DorsetLady]

I’ve always had thick hair, so am lucky that I have some still after the significant thinning that’s taken place since 3 and a half years of Pred. It’s just odd to run a hand through and feel a scalp so quickly!

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

Very true!

[PMRpro Ambassador]

Since it is just over 3 months since you were first ill, it is more likely the thinning is due to the systemic illness affecting the blood flow to the scalp. Pred can do it too but it will come back in - though it may be different. Mine is really wavy now and others have developed curly hair!

[Bluey-1 in reply to PMRpro]

Too right. I think the thinning could be linked to pred but also due to the illness. Mine thinned out but started to grow back, in a weird frizzier way. However, following a TIA in August I’ve noticed further thinning and wonder if this is also linked to blood flow to the scalp.

[SnazzyD]

My hair fell out quite suddenly about 5 months after diagnosis. It grew back fairly quickly but depending on how I was doing constitutionally, it went through various phases. It had another lesser falling out when I had adrenal insufficiency on low doses. Back to ok now I’m off Pred. When I was a nurse I noticed hair loss and skin peeling after acute systemic disturbances in patients, often delayed by weeks or months.

[Drip21]

yep

[RachelJDH]

Yes a bit after about a year - my hair is not falling our so much now but is more fragile and CURLY. 🤦‍♀️

[Daffodilia]

My hair got thinner but came back with reduced dose of pred

[agingfeminist]

fell out in fistfuls when on pred (but could also have been disease related). Wear colorful head scarves. It has grown back since I have been on lower dose of pred (and presumably lower dose of disease). But recently started to brush out in large amounts...no idea why. The headscarves have become a style item for me....they are long, single color, cotton scarves, which I can wrap round twice before tying at the side.

[Oh-my]

I started losing hair after 6 months of Pred. Thought it was my usual autumn drop but it kept on going so I have lost a fair bit. Looking forward to when it grows back in and I have got myself a nice blue warm house hat for the winter months

[MrsPractical in reply to Oh-my]

Hi Oddly enough I was at the hairdressers this week. I found when I first was on Prednisolone 15mg that I didn’t have to visit hairdresser as frequently as before. It was taking longer to grow. As I have reduced over two years it has returned to growing at a normal rate. This time my hairdresser did point out to me that I am not losing my hair but the individual strands are getting finer which also causes them to be more fluffy. She had been speaking to a hair specialist who told her that anyone with an inflammatory problem needs to have a higher intake of ferritin for their hair. She has been upping her ferritin and finding it is improving the condition of her own hair.

I’m not finding my hair a problem so will just continue as I am and hope it’s not too long before I’m off Prednisolone completely.🤞

[Oh-my in reply to MrsPractical]

Interesting about ferritin. Anemia is associated with PMR and I, for one, was bordering anemia caused by the inflammation in the early days. My last blood test was fine so maybe it’s historical

[S4ndy]

My long straight hair fell out around the hairline when I started on prednisolone. Like you I went short and stopped the hair dye. It stopped falling out when I got under 10mg.Now, I am on a 5mg maintenance dose and my hair has grown back. It's curly and wirey now though and the texture is no longer sleek and straight. My hairdresser has adapted my cut. Not as short now but a modern graduated bob. He also coloured it for me back in September after carrying out skin tests and scalp tests. I've been happy with the result as it's made my dull hair shine again and thickened it up a bit. My facial recognition on my phone doesn't recognise me in the mornings though until I've given it a good brush to get the overnight curls and frizz out 😂

[MiniSpec]

My missus lost a lot of her hair starting about 3 months after we both had Covid back in 2021. It took a long time to grow back again, about 6 months or so, and during that time she wore a wig. It made all the difference to her self-confidence when at work, and none of her colleagues were aware of it. That's because she very carefully chose the colour and style to be as close to her original hair as possible.

When she felt confident enough she ditched the wig and just went back to her own hair. Her colleagues noticed the difference, but just thought she'd had her hair done in a different style, and to this day are still unaware that for several months she wore a wig to work.

So if you feel self-conscious about your hair, consider getting a wig. It'll keep your head warm in winter, and your self-confidence will be boosted as well. In fact, if you can afford it get a couple of wigs. That way you can flummox everyone around you by changing your hairstyle every few days.

Did you know that on stage Dolly Parton always wears a wig? Apparently the wigs she wears are so voluminous, she can carry all the electronics for the face mic she wears inside the hair, and no-one can see it. If only they'd bring back Afro styles for men. I'd wear one so that I could hide hearing aids in it, as I'm going deaf.

[Twopies]

I lost a lot of hair at first; then it got seemingly better, now it is falling out constantly; my hair feels “fluffy”, looks like a cloud. I’m wondering whether it might be dry scalp, as I have terribly thin dry skin, a pred gift.

[Body_bonkers]

Had really thick hair but noticed a lot of loss over last couple of months. Feeling the cold now !

[Janstr]

I have naturally curly hair; it became super curly when it grew back after significant thinning due to pred or the illness

[Meggsy]

My hair drop was akin to that of my son’s labrador. It thickened up somewhere between 25 & 10mg and then, like SnazzyD, thinned out again at the adrenal insufficiency stage, though not as severely as originally. It also went through a variety of textural stages. Now on 0.5mg and hair has grown back.

[Pr0jection]

I don't know if this will help you, but I was on 15mg of pred initially. My hair started to thin within a few weeks and I was advised to take biotin as a supplement. It took about 3 months but my hairdresser noticed that new hair was growing and my hair is now a bit thicker. However, I've never had really thick hair but I just want to keep what I have! Good luck.....

[Broseley]

My hair is still falling out even on a lower dose of pred. It's OK at the back but very thin at the front. No matter how I try, conditioners, biotin, folic acid, nothing has helped. It's so fine and fly away, I can brush it but a minute later it looks unbrushed. I call it my Bill Bailey look.

[MrsMarigold]

Hi. Y’all seem to take the hairloss in stride. Mine started before my lupus diagnosis and then became part of the clinical collective of symptoms. I still have days of teeth gnashing. My hair has been white since my 30s. My entire family and extended family are too. Mine has become finer, frizzy and curly. I’ve indulged in some wigs; one I wore on vacation recently/a white wavy hair wig. I have a collection now and am learning to navigate the world of wigs. So much to learn! White hair in humans hair wigs is impossible to find. Synthetic wigs are okay as long as you do not go too cheap. They will look “wiggy.” Getting used to a blond rooted wig in a long shag. The giggle is you get to be someone entirely different with each wig. Thank you for allowing me to comment on your forum. I see my Rheumatologist this week. See what he says about my TIA and sensitive scalp and yep temple headache. Lupus wrong diagnosis or can you have both——sorry that’s another thread. MrsMarigold

[Satya70]

OMG yes!! And I hate it. I'm now taking Hsn-p-1000 (vitamins + collagen) every morning, folic acid, and using biotin shampoo but I'm not sure any of it is really making a difference. If you come up with anything that works, please share!