Help please! Huge hair loss 😩😩😩: Oh my dear... - PMRGCAuk

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Help please! Huge hair loss 😩😩😩

Smokygirl profile image
84 Replies

Oh my dear friends, I am so so unhappy! I’ve lost more than half of my hair in the last six weeks. I have only been on Pred for 6 months —- ( 15 tapering to 11 now) and my hair has stopped growing too. I have always had fine hair & I am terrified I’ll lose it all. I take so many vitamins, all the usual ones for PMR plus 1000 Biotin, 500 iu folic acid, multi vits with minerals & codliver oil. My nails are as long and strong as witches talons but nothing is saving my hair.

I would be so grateful for any info & tips that have worked for you, my wonderful friends, as I am really becoming very agitated about this.

Thank you all! Huge hugs xxxxx

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Smokygirl
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HeronNS profile image
HeronNS

If it is any help, a friend of mine lost a lot of hair and what grew in while she was ill (not PMR but it was an immune condition) was poor quality. Obviously she was more sensitive about it than warranted as we didn't really notice unless she talked about it, but I suggested she get it cut short, usually she wears it nearly shoulder length, I suggested that the "bad" hair was reminding her of the time she'd been so ill, and by having it cut off she would be ridding herself of some of that bad feeling. This helped her overcome her reluctance, and she had it cut quite short. It looked fabulous. She has since let it grow longer again, and her health condition is under control. but at the time I felt the shorter cut helped her look younger as well as healthier, and she seemed happy.

Talk to your hairdresser and get some suggestions about a new style which might make you feel better about this whole sad business. And your hair will improve as your pred dose comes down. Just remember, it takes time.

Smokygirl profile image
Smokygirl in reply toHeronNS

Oh dearest Heron. I was hiding my hamster jowls with my hair!! I’ve shortened it to chin level and layered the back as the thinnest is the crown but my hair has always been very fine and now it is thin it just seems to stick to my head. 😩

It is also greasy so I have always washed it daily. Yes , it is indeed a sad business, but when I read about other folks problems on here I feel so guilty even voicing mine.

Thank you so so much for your comforting words , as always .

Huge hugs and love xxxx

jenerino profile image
jenerino in reply toSmokygirl

I don't know if this will help but a friend of mine, who is a doctor, buys whole Aloe Vera leaves, cuts off about three inches and puts the neat gel from inside the leaf all over her head and leaves it on all night. Then shampoos it off the next day.She has also done this for her husband who had lost most of his hair on top. She does this twice a week and in three months his hair is back and flourishing and hers is much improved. We are going to try this on my grandson who had chemo because of childhood cancer. If you cant buy the leaves locally, I believe you can buy them on line. Good luck

Smokygirl profile image
Smokygirl in reply tojenerino

Wow! That is fascinating! Thank you ! Xxx

Devoid profile image
Devoid in reply toSmokygirl

Have you tried dry shampoo so that you don’t need to wash it so often ? Mine has been coming out but definitely more noticeable on the day I wash it , I think it’s very stressful and perhaps this adds to the problem, hope this helps

Smokygirl profile image
Smokygirl in reply toDevoid

I am going to try Batiste dry shampoo as recommended by Scoopitup.

Perhaps I won’t need to wash it everyday then! Thank you so much Devoid! Xxx

Cyclegirl54 profile image
Cyclegirl54 in reply toSmokygirl

A friend who is recovering from an illness uses Batiste dry shampoo and reports that it’s helpful and avoids shampooing every day. 🌸

Smokygirl profile image
Smokygirl in reply toCyclegirl54

Thank you so much C girl! Going to get some tomorrow! Xxx

Hi SmokeyGirl, l’m so sorry to hear this & understand how you feel. As you may know my hair was thinning with the Meds, Pred & Methotrexate but l developed Breast Cancer & lost all my hair to Chemo. But it just has not grown back fully at all, l’m still wearing a wig & have now accepted that this is now Me!!

I’ve taken all the Special Hair n Nail Supplements, Folic Acid, Biotin, rubbed in so many different Serums, bought special shampoos & at the end of it all, it really isn’t any different. The New Chemo Wiry Hair has now gone but it’s not the Hair l used to have.

If you want a chat by PM please message me, are you in the UK or elsewhere? If you look through my Posts, you’ll see me with Pre Chemo Hair & wearing a Wig - see what you think.....

Sending Hugs 🌷🌷🌷

MrsN xx

Smokygirl profile image
Smokygirl in reply to

Dearest Mrs Nails. I have been so upset for you in the past months with all your far worse problems than mine. You are so brave and practical and your knowledge is wonderful.

. I also have read all your posts re wigs and it is just brilliant that you are coping so well.

I used to do loads of amateur dramatics and always hated wearing a wig on stage, it was so uncomfortable and my best friend, who like you lost all her hair to chemo simply couldn’t get away with one either. However , I don’t suit a scarf , which is what she used until her hair grew back in , so I hope and pray that it won’t come to that.

I am in the N of England and shall thankfully keep in touch with you for advice when needed .

You are so kind and really have enough of your own problems to deal with.

Huge hugs and love xxxxxx

in reply toSmokygirl

I have posted another message about Regaine®️ below.

But on the Wig Option - l’ve written a piece on wearing wigs quite recently but my main recommendation would be - buy a wig as much like your own hair as you can find, don’t buy real hair, they are too heavy & hard to maintain, the synthetic wigs are amazing now, really! Don’t buy anything too full, it looks too wig like 😉 💁🏻

I’ve just ordered an asymmetric short bob, really looking forward to it 😉 if you do decide on a Wig l can recommend a Range & a Great OnLine Supplier.

Take Care xx

Smokygirl profile image
Smokygirl in reply to

Thank you again. Brilliant. Xxxxx

SheffieldJane profile image
SheffieldJane

That does sound unusually extreme and I would seek medical/ Trichologist advice .

I lost quite a bit and my hairdresser was very helpful with a clever, shorter layer cut and Kevin Murphy natural hair products that do help both scalp health and the appearance of volume. It seems to be self limiting. My daughter got Alopecia with a bald patch, this repaired itself naturally, thankfully, she avoided any harsh chemicals and took supplements like you do. I can understand your upset.

Smokygirl profile image
Smokygirl in reply toSheffieldJane

Thanks so much for the tips Jane. Ive now cut it to chin length I’ve been hiding my hamster jowls with my hair, so I am loathe to cut it any shorter at the moment! It is thinnest on the crown so I’ve layered the back a bit. It’s so horrid seeing long hairs on my sweaters and scarves and no growth! I shall defo get some Kevin Murphy stuff, can I get it on line?

SheffieldJane profile image
SheffieldJane in reply toSmokygirl

Yes you can get it on line. I use the plumping shampoo and plumping rinse, a volumising spray and a cream called Easy rider. It is expensive but it lasts ages, as you only need a bit. Another tip from my hairdresser is to put hair clips on your crown so that it produces a little hump of hair for each one, then dry it with a diffuser on your hairdryer. The effect is a thicker looking crown. I do have Pred waves anyway.

You could experiment with a contouring product to shade your choochy face a bit. I do when I’m going somewhere with kind lighting, like a restaurant. The young and beautiful layer it on for their selfies.

Smokygirl profile image
Smokygirl in reply toSheffieldJane

Oooh! Brilliant tips Jane! Thank you so much! I shall try the hair clips tonight for the bridge club! At the moment there is a kind of double parting on the crown which shows my scalp a bit no matter how I dry it. I have no Pred waves —- just wispy fly aways at the moment! BTW you are young and beautiful!! Xxx

piglette profile image
piglette

I had terrible hair problems. I had shoulder length, fine, greasy hair. I had it cut very short to get rid of the rubbish hair and people kept saying how funky it looked. It was slightly spiky. I liked it too.

Smokygirl profile image
Smokygirl

I’ve booked an appointment at my GP but sadly can’t think he will have a solution.

I have cut my own hair for the last 60 years, taught by Vidal Sassoon in the 60s !!! I used to travel down to him from the North and on one occasion he spent half an hour showing me how to cut it in between visits!!

I have shortened it considerably and cut two layers into the back. The crown is the worst loss.

Just a thought, I am craving and eating lots and lots of boiled sweets. They strangely have helped me keep my weight down.

I have never eaten added sugar in my diet before Pred and I wonder if excess sugar can cause hair loss?? Xxxxx

in reply toSmokygirl

Your GP may recommend Regaine®️

regaine.co.uk/products/women

I decided against it due to Blood Pressure Issues

Regaine®️ was developed from Minoxidil, which is a vasodilator used to treat high blood pressure (hypertension) it was one of those anecdotal coincidences that people (men generally) noticed a difference in their hair growth while on Minoxidil.

If you don’t have Blood Pressure Issues you may want to consider it but discuss with your GP first.

Smokygirl profile image
Smokygirl in reply to

I think what has put me off Regaine is the fact that once you start, you can’t stop using it!

Also it was originally for Male pattern balding—- is that what we get from Pred? X

in reply toSmokygirl

Not in my case, my hair was thinning at the front but suddenly l was on the Breast Cancer Express, after Chemo l lost all my hair on the Predicted Day! Happy 60th Birthday! Except for a little fringe around the nape of my neck, that has always continued to grow & l now have it feathered into the wig so it looks very natural.

It’s my crown that’s very sparse & the front is very thin.

Smokygirl profile image
Smokygirl in reply to

Your experience is truly invaluable Mrs N but I am just so sorry you have had to go through it all. Huge hugs xxxx

in reply toSmokygirl

Thanks 😘

Reader7 profile image
Reader7 in reply toSmokygirl

I've used Rogaine for many years...it's just become a habit for me and the generic form (minoxydil) is quite reasonable...you can purchase it on Amazon. I've kept my hair during treatment for PMR...though changes in texture during the highest dose. Good luck!

Smokygirl profile image
Smokygirl in reply toReader7

Ohh that is so interesting! Thank you so much! I may come back to you at a later stage for more info if that is OK! Best wishes and hugs xxx

Reader7 profile image
Reader7 in reply toSmokygirl

That's fine, Smokey...it takes 4 or 5 weeks to see a difference. Hope it works for you!

SheffieldJane profile image
SheffieldJane in reply toSmokygirl

I got sugar cravings with Pred. never having had a sweet tooth before. I think my poor body was trying to get some energy. It is more likely to be the sheer stress of having a significant systemic disease, coupled with Pred and maybe other meds. Your body is under attack perhaps it sacrifices things like hair health. At its worst I considered hair extensions, my hairdresser wouldn’t let me. It would have ruined what little I had, she said.

Smokygirl profile image
Smokygirl in reply toSheffieldJane

Yes, that was my first idea, but I know they damage the hair they are attached to ☹️☹️☹️

Smokygirl profile image
Smokygirl

Oh Piglette, I was hiding my hamster jowls with my hair! I really don’t suit it short! 😘😘😘

PMRpro profile image
PMRproAmbassador

At this stage the hair loss could well be the left overs of you being ill before starting pred. But I think it is a case of patience - my hair shed dreadfully before diagnosis, improved on prednisolone but it took a while as hair doesn't grow very fast, went utterly mad on methyl pred and back to something acceptable on prednisone. But I still lose a lot of hairs and it drives OH mad ;)

Smokygirl profile image
Smokygirl in reply toPMRpro

Thank you dear Pro. That really gives me hope! You are always so knowledgeable and you always calm me down!!

What do you think about my excess sugar intake accelerating it? Is that a possibility? I was a war baby and we never had sweets when I was a child , just liquorice root !!!!

If only I didn’t crave them so ! Huge hugs and love xxxx

PMRpro profile image
PMRproAmbassador in reply toSmokygirl

Too much sugar is bad for us - no getting away from that! But how bad for each individual?? Who knows...

Noosat profile image
Noosat in reply toSmokygirl

I am surprised that you eat any sugar. I found it was like a match to the kindling in creating pain in my muscles.

Smokygirl profile image
Smokygirl in reply toNoosat

Interesting. No, no pain——- just joy in my mouth!! Those sweets are just so damn delicious ...... but I’m determined not to have any today. I shall have a hot choc drink when the craving hits me!!

Whitner profile image
Whitner in reply toNoosat

I haven’t seen any difference in my muscles when I have a beer or glass of wine I am happy to report!😊

PMRpro profile image
PMRproAmbassador in reply toWhitner

Pre-pred a glass of wine was one of the very few things that let me move more easily!!!

I found pmr started the hair loss as did hypothyroidism. Now I don't brush my hair unless I have to, I just tease it. I only wash it once a week. Unless I have to wash because of head sweats. I use batiste dry hair shampoo inbetween which thickens my hair. It doesn't seem to be falling out anymore at 7mg but it may. It has changed texture with going grey, menopause, hypothyroidism, pmr and pred. It's going back to the old fine hair but with more of a kink.

Smokygirl profile image
Smokygirl in reply to

Thanks Scoops! I’ll have a go at the Batiste dry shampoo— I’ve always washed my hair every day as it is fine and greasy despite being tinted blond! Does it make your scalp itchy? Xxxx

in reply toSmokygirl

Actually not at all but I may be just used to it now. Of course my head is itching now!!

Smokygirl profile image
Smokygirl in reply to

😂😂😂

in reply toSmokygirl

Yes mine has always been fine and greasy too so washed daily. I use conditioner now and never could before. You can get several different formulas if batiste and initially I just had a quick spray. But it gives it body so I like it now. But don't try running your fingers through it!

Cyclegirl54 profile image
Cyclegirl54 in reply toSmokygirl

I stopped dying my hair blond about 6 years ago( platinum now) as I found the Nice n Easy (other products are widely available 😀!) was irritating my scalp and causing some hair loss. 🌸

Smokygirl profile image
Smokygirl in reply toCyclegirl54

I went ash blond 50 years ago—— I really really want to keep it!! 🤣🤣🤣

Reed2 profile image
Reed2 in reply to

Hi.. how many time to reverse coarse hair texture by hypothyroidism

PMRpro profile image
PMRproAmbassador in reply toReed2

A post from Hidden is almost certainly from someone who has left the forum

Blearyeyed profile image
Blearyeyed

Oh no , so sorry I can empathize .

Have you always had thin and fine hair despite knowing how to treat it?

I have and it is a Family Trait , since the moment I cut my very long hair in my early twenties things seemed to go downhill. Not having thick locks also made any hair loss and thinning I had over the years from Stress or Ill Health more noticeable .

My family also suffer from Stress or Illness induced Alopecia , and are hair comes out in clumps of handfuls at these times. I can have a receding hairline like Count Dracula at times . My poor Aunt has had several episodes of hair loss , including bald patches during the time that she was in extreme pain waiting for a hip replacement.

You seem to be taking all the steps you can to help reduce it but the fact that it seems to have increased more in the last six weeks does need some checks with the GP.

You could benefit from the usual blood tests , including a check if your thyroid function , vitamin or folic acid deficiency ,, anaemia just to make sure these aren't involved.

If it isn't , then you may be in the unfortunate category of people whom suffer hair loss from Stress and Steroid Use .

Reducing Stress with relaxation and gentle scalp massage can help reduce the double whammy of drugs and Stress and illness on your hairline.

You are already taking supplements , but you may also benefit from Vitamin K2 if it isn't in your current supplements . Take supplements at the right times mid meal it helps to increase how much you absorb .

Increasing fluids and Vitamin C / E and A and having more Protein / Collagen boosting foods in the diet , not just supplements, to help counter the affect of Steroids on your Collagen also reduces the thinning .

The need for sugar can also be a product of the affects of Fatigue as well as Steroids on your system and Fatigue or Sleep Disturbance can also cause more hair loss and skin problems.

Using more natural hair products , washing and styling hair less often, can also help , especially if you use dyes , styling products , heated tongs or a drier.

If you find you have lots of baby or virgin hair coming through too using a virgin hair lotion or cream can help boost hair growth the products more often used for " Black " hair . Natural African black soap products with oils like Argan or Hemp and Shea Butter can improve growth and thickness and reduce wiriness. They have helped me.

You do need it checking with the GP as they may also have a product for alopecia that works for you. Good luck xxx

Smokygirl profile image
Smokygirl in reply toBlearyeyed

Oh amazing Auntie Bee! I’ll answer from the beginning

Yes , always had thin fine hair but enough of it and never any problems until now.

No, I don’t think it’s alopecia as it is all over thinning and worse on the crown. It’s also just stopped growing — all over!!

Yes, I am having all my bloods done in two weeks as it was my Birthday last month . I shall ask for all the extras you suggest.

Yes, the hair loss is stressing me ——but would be worried about gently massaging my scalp in case more came away!! 😜

I already take Vit K2 but not Collagen. Should I get some and what strength? I use a sulphate free collagen shampoo. What foods have collagen in them please?

My diet is low carb with some fruits banana etc. And sweets!,!,!!

I dye my hair and have no baby hair coming through ☹️

Yes I am fatigued but sleep OK and also get an hour in the afternoon

Thank you again! Love you Bee!!!

Blearyeyed profile image
Blearyeyed in reply toSmokygirl

You can get alopecia as well as stress / drug or illness based hair loss that looks more regular , especially around the temples and middle of scalp , possibly because these are areas that are weaker from more physical changes and activity happening to them.

I don't take Collagen supplements yet , as I am still not convinced that these very expensive supplements will make the impact on Health related Hair and Skin changes that is implied on the box .

I do boost my Collagen and Biotin with food from eggs , fish and shellfish, white meats and offal , dairy , cashews and seeds and I make Homemade Bone broth from bones I get cheap ( or for nothing !!) from the butcher , roasted off then slow simmered or cooked in the slow cooker . I add this to stews and soups but also just drink some with lunch once a day , like having a Bovril or Consomme.

I have garlic , green vegetables , and varied colourful fruit and veg including citrus , pineapple , banana , guava , berries which improve Vitamin C , zinc and copper intake all nutrients that help you process the Collagen .

This sort of food also seems to help beat some Fatigue.

I also use Omega 3 and like you have a Biotin supplement along with my prescribed Calcium and Vitamin D and the standard daily women's multivitamin mineral.

The water and green tea also helps improve my skin and hair and makes my nail that grow quickly less brittle.

Getting rid of any dye and styling products and using the all natural hair products helped me more than the collagen hair products I tried first.

Gentle massage scared me too , as hair brushing and washing can bring out lots but the massage is more like gentle touching with your fingertips in a very minimal circling motion not firm movement. You can use one of those wire scalp massagers as well plus relaxation with deep breathing . It does help stimulate the follicles and improve the oxygen supply in the scalp which both help reduce the thinning for me .

It took time and I think no one thing makes a big difference in itself with this type of Health related hair loss , each thing just helps a little and reduces the symptom , rather than during it completely.

Sorry , I did have a giggle at your reply , as it sounded like your blood tests were a Birthday gift!😋😂😂😂

Feel free to send me a Private Message if you want to chat or need more advice .

Hugs xxx

Smokygirl profile image
Smokygirl in reply toBlearyeyed

Thank you again darling Bee. Hope you are feeling much much better yourself.

Incidentally the Birthday bloods always feel like a gift to me—- our practice rations them!!!,

Huge hugs xxxx

HeronNS profile image
HeronNS in reply toSmokygirl

Don't rub your head or your hair if you want to try massage. Press your fingertips onto your scalp and gently move the scalp, hair and all, in a very small rotating motion. You can just do a little bit, see how it goes. You won't be pulling on the hair at all so if any comes away it was going to anyway. Will encourage blood flow, hence nourishment, to the region.

Smokygirl profile image
Smokygirl in reply toHeronNS

That sounds great. Going to do it now! Xxxxxxxx

Paperroses profile image
Paperroses

I lost about a third of my hair when I tapered down to around 10 mg prednisone. and then it just stopped and its back to normal losses.

Smokygirl profile image
Smokygirl in reply toPaperroses

Ooh thanks sooo much for the reassurance Paperroses! I’m tapering down to 11 mg at the moment .5 per month so roll on 10 mg in two months!! Xxxx

Paperroses profile image
Paperroses in reply toSmokygirl

I'll add that my hair is fine but very thick. It seemed limp for awhile but I in 2 monthstime it seem to be normal looking

Just less of it .use a good shsmpoo.

Poppylop profile image
Poppylop

Hi smokeygirl , I'm having the same problem with my hair, it's really getting me down. I've been on pred since August, 40mg for pmr and suspected gca , after three scans they said I don't have gca so didn't start reducing for quite a while, I am now down to 10mg. I've always had fine hair which was thinning anyway from the menopause but since being on pred it's been much worse, I actually cried the other day when I washed it as two big clumps came out. I have bought the Viviscal supplement s shampoo, conditioner and elixe r because it has really good reviews but it takes about three months to see improvement, I've only been taking it for two weeks so far so it hasn't made any difference yet, I'm really hoping it will as it's quite expensive, though I did get it while it was all on offer at Holland and barrett, I'm also taking biotin, folic acid, k2 and iron. It's so depressing isn't it, I'm so worried it's not going to stop falling out and I'm going to be left with no hair, I will definitely invest in a wig then.

Sending you love and hugs

Smokygirl profile image
Smokygirl in reply toPoppylop

Oooh Poppylop it’s an absolute bugger!!!! My hair has always been my best accessory!

You and I started Pred approx at the same time then. I have been looking at Viviscal too. Please keep in touch and tell me how it’s going, I’ll wait a couple more weeks and see how you fare with it before I invest! Good luck , and huge hugs!!! Xxxx

Poppylop profile image
Poppylop in reply toSmokygirl

I will definitely keep you posted x

Galloping profile image
Galloping

Hi Smokeygirl, so sorry about your hair loss, it is very distressing.

I also have fine shoulder length hair but am lucky that so far I haven't lost any since being on Pred since last Aug. Started on 15mg and now at 5mg.

I've taken a VitB complex supplement, plus C, D and calcium as advised since diagnosis. B complex is better than just overloading on a couple of the B group, it's more balanced. You may also need iron so get your levels checked with a blood test.

I've also been taking a powdered marine collegen supplement for over a year and I'm convinced it's played a big part in keeping my hair. I've often mentioned this on the forum. Just dissolve a scoop in any drink, it's virtually tasteless. Not an overnight cure I'm afraid but hopefully in time you'll notice a difference. Good for skin, nails and joints too.

I stopped washing my hair every day too, it just makes the greasiness worse.

Just twice a week with a Lush bar shampoo and normal conditioner.

The bar shampoo does make your hair feel like straw when it's wet so do buy a wide tooth "Afro" comb to gently comb through before drying. The bar shampoo makes mine look and feel a bit thicker too.

Good luck Smokey.

Smokygirl profile image
Smokygirl in reply toGalloping

Oh great tips! Thank you so much. What make of marine collagen supplement should I buy and where from? I shall go out this afternoon and get it!! Does the scoop come with it ? If not what measure do you use? So grateful for this —- might be cheaper than Viviscal supplement! Huge hugs xxxx

Galloping profile image
Galloping in reply toSmokygirl

Hi again Smokeygirl, sorry I didn't get back to you earlier, been out most of the day.

Anyway the collegen I buy is called She Naturals collegen Powder.

Comes in a 400gram bag with a scoop. I find at 1 scoop a day the bag lasts about five weeks.

I buy mine from Amazon and chose this one as you get the most for the money, costs £22.95

I dare say you could buy it from a health food store but it would probably cost more and have flavours and other additives.

This one can be added to any hot or cold drink, or soup or porridge etc.

Hope that helps.

Smokygirl profile image
Smokygirl in reply toGalloping

Great! Thanks so much Galloping! BTW are you Galloping because you have horses? I used to breed Anglo Arabs ! Hugs xxxx

Galloping profile image
Galloping in reply toSmokygirl

Hi again, yes I used to have horses from childhood u til about twenty years ago. Had to give it up after a nasty fall which fractured three vertibrae. My sister bred Arabs for years, we're a horsey family, daughter and granddaughter also ride.

I miss it but after the fall, the PMR and my age (76) I can't do it now.

Hope you get results with the collegen. You can also get bovine collegen, just make sure it's grass fed organic.

I prefer the marine type as I don't eat meat. You can also make bone broth, same thing but a lot more work.

BTW I also found since taking it I don't get those purple bruises that you get from thin skin, again caused by Pred.

Good luck, hope you get results soon, and ease up on the frequent hair washing too, it does help.

Smokygirl profile image
Smokygirl in reply toGalloping

I’m two years older than you, & I miss it too, but after my last home bred mare died also about 20 years ago , I gave up as I was worried about riding other people’s horses. My own home breds always looked after me— it’s an entirely different relationship! They behaved just like my home bred dogs and were in fact jealous of them!! So funny! Have to say I do admire the Queen riding at her age!!

Anyway thanks again and I shall put my order in tonight!! Xxx

Daffodilia profile image
Daffodilia

My hair loss stopped after about 10 mg I think

Smokygirl profile image
Smokygirl in reply toDaffodilia

Thanks so much Daffodilia! That is so reassuring! Only two months to go then!

Huge hugs xxxxx

Choco-Holic profile image
Choco-Holic

Hi (from Newcastle also)! I’m like you and my hair is/was bothering me immensely. Friends and family said it looked no different, but I beg to differ. I’m more than a year into my journey and my highest dose was 50mg prednisolone for GCA/PMR now down to 5mg, I’m also taking methotrexate which also contributes to hair loss! I’ve no patches, just every time I brush it the brush is full. I still colour my hair myself but wash my hair as little as possible maybe just once a week 6/7 days depending on where I’m going. I’m finding it much drier so can get away with it. I brush as little as possible and if it gets too distressing to look at, I just tie it back so I can’t see it haha. I’m taking folic acid 5mg 6 days per week and I’m using Viviscal shampoo and conditioner. I was at my hairdresser for a trim last week and she says it’s growing back in and I do feel it is now, although as my hair is very grey, it is coming in curly and a bit wiry (like pubic hair!!) I guess it’s a process we have to go through but I’m sure it will return in whatever form, who knows! Don’t think I’d rock the Shirley Temple look however 💁‍♀️

Smokygirl profile image
Smokygirl in reply toChoco-Holic

Hello dear fellow Geordie! You really made me giggle re the pubic hair! How long did you use Viviscal before you saw some results? It must be the marine collagen thing that works!

I think Galloping uses just that by itself . When she gives me the info I’m off to buy it!

It will be a good few months til I’m on 5mg. So I’ve got to act now!

Keep in touch ! Huge hugs xxxxx

Hello, Like you, I was diagnosed in 2019 Dec for me, so not been on the Pred as long as yourself. Really hope my hair doesn't come out too. A few years ago mine started to thin, so can't blame the Pred. However, if it's known for hair falling out or thinning, like you I will be anxious. Have you tried the shampoo Plantur 39? I take Biotin as well. I've put my thinning hair down to age and menopause. I've never had a good head of hair, so really don't want to lose anymore the longer I'm taking Pred. Only option is to buy a wig. My friend has lost so much of her hair (she's not on pred) so resulted in wigs an they're lovely and look great. Sad, as she had beautifully thick and wavy hair too. Mine is horrible, fine and thin, but always manage to make it look ok. It's a big deal when women lose their hair. How are you coping with your PMR. What dose were you started on and have you started to taper yet?

Kind regards

Anne

Smokygirl profile image
Smokygirl in reply to

Hello Anne! So nice to have your input! I think it’s us fine haired people that feel hair loss most cos it shows more! No haven’t tried Plantur 39 yet—- I have a feeling I’ll be defo trying every option though!!

For the moment I am coping with PMR OK thank goodness , mostly thanks to all my wonderful friends and gurus on this forum. My GP leaves it all to me —- no Rheumy yet.

I started on 15 mg and am tapering to 11 at the moment. I go down in .5 increments every month as I had a flare early on and did not like the recurrence of pain at all!

I walk a brisk mile every morning, eat low carb and sleep for an hour every afternoon.

Hope you too are coping well, what dose did you start on?

Huge hugs xxxxxx

in reply toSmokygirl

Hi again, you're very welcome and hope the shampoo works for you. That with the Biotin not sure if there's anything else that helps. I was started on 15 mg of Pred on the 20th Dec 2019. After suffering 16 nights on the trot of not sleeping and only having took them for the 16 days, my rheumatologist suggested to drop the dose to 10 mg, which helped a lot, even though I get the odd night here and there where I don't sleep all night long, but again I think that's an age thing. I took the 10 mg for 21 days he then told me to start tapering by 1 mg per month....currently on 9 mg. Yesterday I felt a bit achy but nothing I couldn't put up with. I'm just hoping as the months pass I don't have a flare up....really don't want to have to up them again. Wish I knew someone on here that managed to get off the Pred in a year. I'm not holding my breath that I will though. Feel absolutely fine in myself now that dreadful pain has gone. I live in the South East of England and sure the cold, damp weather has an affect on any type of arthritis. Been out with my friend today mooching around the shops and lunch, bless her she has Fibromyalgia and in quite a lot of pain from it today, but didn't moan one bit. Sadly, steroid treatment doesn't work for Fibro.

I'm on Face book if you're too, if you want to friend me, more than happy to accept your friend request.

Best wishes

Anne

onedaughter profile image
onedaughter

You have had a really good response but I thought I would just add that hair loss IS a side affect of taking Pred and I too lost a LOT of hair, nothing I did made any difference but when I got down to about 2mg it started to thicken up slowly. It is now almost back to its normal thickness but it now has a bit of a curl instead of my usual straight locks. Don't lose heart yours will also return as you get rid of pred. Good luck!

Smokygirl profile image
Smokygirl in reply toonedaughter

Thank you so much for your kindness. I really appreciate your input and you are so reassuring! I realise it is going to take time and just I hope I keep enough of of my old crowning glory! Every good wish to you and hugs xxxxxx

in reply toonedaughter

That's encouraging news and thanks for that Smokeygirl

Jackoh profile image
Jackoh

Hi I have been on Pred for just over 5 years. I would say my hair has definitely got thinner. I think like you I used to wash my hair every day or every other day. Lately I have noticed that my hair has gone wavy and I tend to now let nature take its course and go with the wavy hair look although I still have it cut into a bob and have it coloured. I don’t now brush it but scrunch it each day after dampening it. But also I don’t wash it so often - 2 to 3 weeks in between which I know sounds disgusting but it now doesn’t get greasy. I now don’t sweat so it doesn’t get sweaty and looks in good condition ( amazingly!) When I do wash it I lose quite a bit of hair. I think it took me quite a while to get to this stage of lengthening the time between each hair wash but it has,I believe,stopped me losing so much hair.

in reply toJackoh

How many are worrying about their weight gain as well as hair loss ? At the mo none for me so far, and the weight that I initially lost just before diagnosis, (certainly true when they say it causes loss of appetite and weight)I lost half a stone, was never hungry. Appetite has returned and now trying kerb it when the steroids give us terrible hunger pangs even after a big meal. I'm still a chocoholic and will never give that up even though I know sugar and carbs are bad for us. At 72 we must have some little pleasures in life ha ha I don't drink or smoke, never have, so choccy is my guilty pleasure, so only have myself to blame if it causes inflammation. I've cut down on carbs which I also enjoyed. Pasta, Rice, Bread etc etc. Now loads of veg and low anti-inflammatory foods....boring !!

Anne

Smokygirl profile image
Smokygirl in reply toJackoh

Sorry Jackoh — So grateful for your brilliant idea! My reply to you is just below Staplehurst next one down! Xxxxx

Smokygirl profile image
Smokygirl

Thanks so much Jackoh! Really great tip! Good idea to scrunch — I used to do that some years ago. Only prob was that the day after , it was very difficult to comb and I used to tug at it quite a bit ! I have noted your solution of dampening and re- scrunching and shall defo try that, Brilliant idea—- thank you so so much!

Huge hugs xxxxxxxx

phebamom profile image
phebamom

When I was on Methotrexate my doctor prescribed prescription strength folate to prevent hair loss. I am no longer on the medication . it does not help with PMR. But, I do still take Methylfolate, the best form of folic acid. try taking a good dose of methylfolate. You can get it from the health food store, or ask your physician if they will prescribe a prescriptive dose. I am betting your body is just having a difficulty with b vitamins, especially methylfolate. Take a lot of b-vitamins, and take a separate methylfolate. If you are on antacids in any form you will not absorb nutrients as well. This is especially true of the b-vitamins.

Smokygirl profile image
Smokygirl in reply tophebamom

Thank you so much —- very grateful for your suggestions. I am not on any antacids as I take my Pred with yoghurt but I shall defo ask my Doc next week about Methylfolate. Does it come in different strengths? How much do you take?

Thank you again xxxx

phebamom profile image
phebamom in reply toSmokygirl

Yes it does come in different strengths. My pill is a few hundred times the daily requirement. But the single pill I had as a prescription was ten times. I no longer do the prescription, but do take a daily pill. I found a chewable pill as I get sick of swallowing pills. If you are losing that much hair perhaps your doctor will prescribe. Although I swim with a woman who went completely bald overnight, and her rheum. appt. is not until late in February. She did have a test that showed an ANA of 720. Her problem is suspected to be Lupus, but they do not know for sure yet. She is under a lot of stress. stress can do strange things to us.

Smokygirl profile image
Smokygirl in reply tophebamom

OMG that is frightening! Mine seems to be general thinning and minimal growth at the moment. I am now eating ground flaxseeds also as they are apparently good for male pattern hair loss. Thank you so much for all the info, really helpful! xxxx

phebamom profile image
phebamom in reply toSmokygirl

This poor woman has been through a lot. she went first to the same rheumy I went to a decade ago. I left his office in tears. She had the same experience. An overbearing ass of a human being. He told her she did not have Lupus, even though she has an ANA of 720! She has changed doctors, but the first appointment is not until end of february.

Smokygirl profile image
Smokygirl

Poor lady..... Rheumies are so variable. xxxx

lauravarez profile image
lauravarez

Even the best shampoo for hair loss for men can cause harm if selected without considering the scalp and hair type. Some components can cause dry hair, and therefore are not suitable for damaged and weakened hair. Warming agents are contraindicated if the skin has damage or rashes. In no case should you use shampoo for hair loss for men to the fair sex and vice versa? Therefore, when choosing a shampoo for hair loss for men, it is necessary to pay attention to its composition. When I was faced with hair loss, I decided on shampoo on hairfolli.com/blogs/news/to..., after which I was surprised by the quick result.

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