Obviously the answer to this is yes - when I stop taking the little pills - but as I am going to be on them long term does it mean that the diffuse thinning could mean I'd lose all my hair?? I've been lucky(ish) with other side effects but this one is definately a worry.
Hair thinning - does it ever stop?: Obviously the... - PMRGCAuk
Hair thinning - does it ever stop?
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jaycee444
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49 Replies
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Hi Jaycee
I think we’ve talked about this before, I’ve been up n down on Pred with & without Methotrexate causing my hair to be thinner.
As you may know l had Chemo mid way through my PMR Journey & my hair has really, really struggled to grow back........
I’ve worn a wig for four years Post Chemo but l can see an improvement in my hair recently, l’m currently on 12.5mg Pred & NO Methotrexate at this time.
Have you tried any supplements though l’m not convinced they do a great deal!
If you go to my Profile & look at my Avatar picture that’s me wearing a wig & a short way down is my photo from the NewsWire, that was taken the day before my hair fell out......
If l can be if any help you can always PM me at anytime.
Kind Regards
MrsN
You can take Folic Acid, on prescription. One lady who was one Metho, her her came back to normal once she had started the FA. Just make sure that it is ok with any other meds you are taking...........the chemist will tell you.
in reply to jinasc
When they stopped my Methotrexate l still had some Folic Acid left, so took them & l actually think it gave my hair a boost!........
SheffieldJane in reply to
Are there any contraindications with Folic Acid when you only take Pred.? I vaguely remember PMR Pro telling me something ages ago.
in reply to SheffieldJane
I don’t believe so as my Consultant put me on it with the Methotrexate & l was obviously on Pred at the time, l’ll check it out & let you know.
I have checked & there are no issues.
That it's OK is more likely than it isn't!! If you take it while on mtx and pred there can't be much wrong with it. I finished up my folic acid tablets too.
I thought so too
My hair recovered as I got below 10 mgs. My imaginative hairdresser took me in hand with a clever layer cut and introduced me to Kevin Murphy totally natural, organic hair products for giving the illusion of volume. I developed curls having always had poker straight hair. So all in all it has been a positive experience for me.
Thanks so much for the Kevin Murphy tip. I’ve ordered some product - like the company’s attitude to natural ingredients and responsible plastic sourcing, plus contribution to spreading the word about self checking for breast cancer. Am now awaiting bouffant hair 😉
They are pricey but you only need a blob. I like the fact that they are natural yet effective and smell lovely.
I am on 7.5 pred and my hair continues to thin, it has moved down to my face eeek! Would love to try anything to boost hair on my head but not my face. Those who have tried folic acid did facial hair increase? I might need to start shaving!!
I used my epilator and they do make ones specifically for faces. The effect lasts longer than shaving and while the first time is a bit pinchy that improves after the first few times.
in reply to mtrafter
After Chemo l had no hair at all but my face developed a down like covering which l whizzed the epilator over & that never came back. Just odd random patches which l have removed by Threading.
mtrafter in reply to
Great that your facial fuzz did not come back, I should be so lucky.
in reply to mtrafter
The epilators though a bit pinchy as PMRPro says it does work, it comes back softer & less n less 🤞🏻
I have same issue, but a hand held epilator work best. I use one calked "YES".. It does not hurt in.sensitive areas above the lip eg.
Can be used anywhere on body, but I reserve it for face. Shaving is the worst thing you can do. Harsh whiskers will be back in hours.
Dipilatories in cream form can burn the skin; gentle epilators are best. Best...
Thanks for your comments looks like I will have to bite the bullet. You would think I could manage pain and discomfort after having PMR for 2 and half years wouldn't you!
Especially when it is just a few seconds 
Honestly - the first time i used an epilator ever I squeaked - within 3 sessions I really did wonder why!!! It's a bit like pred I think - the result makes it worth it 
in reply to PMRpro
I felt like that about an electric toothbrush. The first time I thought it would rattle my teeth out. Now I can't use a normal tooth brush and feel my teeth are clean. The epilators are just a bit too expensive at the moment. Even though I have had the dark sideboards and stache, it's almost gone at 6mg.just a downy peach fuzz now. I have always had very fine hair and never been hirsute.
I have been using alpecin for a month that I got on special offer. It has made my hair feel thicker but not sure how!!
Oh yes - an ordinary toothbrush just doesn't do the job now! Occasionally I will use the electric one twice to get an even better result
Thanks for all your replies and advice. Am going to start Folic Acid to see if it helps.
If you go on your post page now , you will see lots of links under the "related posts" title in the right hand side bar that you can click through to read other peoples suggestions on how they managed to reduce their hair loss issues.
Taking Folic acid , B vitamins , Omega 3 and Vitamin K2 , as well as the Vitamin D and Calcium supplements help to reduce thinning.
Its the collagen and vitamin content that used to make egg and beer conditioning so popular for its ability to improve the gloss of hair for many decades.
The links have lots of suggestions for hair products to try , the more organic the better in my view , sometimes caffeine formulas help with hair growth , but products definitely come down to a bit of trial and error for each person , what works for one can be useless for someone else.
Not washing your hair every day but leaving it three days or more helps , washing too often or doing alot if styling strips the nutrients from the hair and natural oils.
A coconut oil or other warm oil rub on it once a week can add some strength and stop the ends splitting.
Massaging the scalp can also be beneficial.
Lots of hydration from drinking helps too.
As you say yourself , it will improve in time as the dose reduces , it's a shame that it is a visible side effect that can make you feel down , but the best thing you can do for hair is reduce stress. It is one part of your body that very quickly changes in condition from the effect of stress .
It is not a myth that people can loose all of their hair from a sudden fright , it can even change colour afterwards. This happened to a friend of mine when they fell out of a tree at 13 , all of their black hair dropped out and grew back pure white afterwards , never changing in colour again.
Hope things improve soon , and when you have some tips of your own please write another post and share your secrets with us.
Hi jaycee444. I have the same problem with hair thinning. I've had long hair for a very long time, years, but it is coming out big style now each time I comb it and worse with each wash. Am on 5mg at present and seems to be getting worse not better on lower doses! I've got to the point of not washing it for a week, and also resisting using the straighteners to see if it helps. I read about a shampoo called Grow Me by Waterman's. I have just used it for the first time yesterday so will let you know if it works for me. I'd be interested to know if the folic acid supplement works, so please give us an update soon. All the best. Xx
I’m on 6mg and am losing my hair at a rate of knots. Always had thick thick hair and now the elastic for my pony tail has to go around about 6 times when it used to be 2-3 times. I’m 2.5 years into PMR. Will buy some folic acid today from the chemist hopefully.
Hello. I feel for you.
I posted about this recently as it was one of my major concerns.
I went to see a trichologist who assured me that i wouldn’t lose all my hair. Phew! Yet it continued to thin. I have probably lost over a third of my hair since taking pred - and like others, I have found my hair loss worse at the lower doses. I didn’t have much hair in the first place! I tried folic acid supplements l, but they didn’t seem to help me.
After posting, I bought some Imedeen hair and nails supplement and have been taking them for almost a month now. I can’t say it has totally stopped my hair fall, but it does seem to have slowed it down a lot. It could be a coincidence of course, but for now, I am going to
continue to take it - and pray!
My nails have certainly improved hugely - even my friends have commented!
It seems that what works for one, doesn’t work for everyone, but anything is worth a try.
Hope this helps. 😊
Re hair loss - worse at lower pred doses - me too. Dispiriting, isn't it?
I'm at 4,5mg - a nadir.
Will try your Imedeen supplement and see if it helps. Fingers crossed.
Onwards . . . .
I believe the life cycle of head hair along with the impact of pred, leads to cycles of hair thinning, moving back and forth from active loss and then slowing down/stopping. So for me I paid attention to the loss and sure enough it seemed to be cyclic once I started the pred.
The consistency of my hair also changed (from poker straight to wavy).
From what I’ve read, it will grow back after the medication is ceased, but until then I just do my best creatively with my hairdresser, and I take biotin, which has helped with both my hair and nails.
I decided to give alendronic acid a break. Nothing else in my life changed as I was on a 6 month stint at 5 mg. My hair grew back in about 12 weeks. So I won't take AA again as I have never had a scan so don't really know if I need it. However Dr's do not believe me and say AA does not cause hair loss. So this is a non scientific view which I cannot recommend to anyone to follow.
Well just tell them to read the list of side effects! Even the NHS site includes it under common side effects.
nhs.uk/medicines/alendronic...
If I had £1 for every time a doctor denied a side effect I could dine out well for a year ...
Hi Jaycee,
Yes, it stops if you are diligent with Biotin and a shampoo like Dr. Bosley's. Dr. Bosley develped a hair restoration technique which I have never needed, but he is an expert in field., but I have used his shampoo. I take 10,000 mcg of Biotin mcg.everyday ; I do not shampoo until I feel my scalp is itchy and dry.
Hair growth and loss is cyclical in healtjy people too.. But normal hair loss should not exceed 10 strands a day. Don't get preoccupied with countimg that.
My iron was low on blood test; ie (Ferritin ) and.I was anemic so I also take timed release iron; (2 ) 54mg tablets by Douglas Laboratories; You can find them online. I buy mine on Amazon, but you can find them on other websites.
Avoid harsh color treatments if you color your hair until it is healthy again. Never do it yourself; always use a good professional.
i also have another strike against me; I get bioidentical hormone replacement treatments in pellet form placed undet the skin. from my gynecologist every 3-4 months which includes testosterone.. Long term use of testosterone can cause hair loss, but nonetheless, my hair is now full and dense You can modify your diet to eat more iron rich foods like spinach, greens, etc.
But it doesn't happen overnight. A wig is not a good solution b/c it deprives the scalp of oxygen. There are good cosmetic powders in different colors you can use to fill in a bad spot fot a special occasion.
This regimen has worked for me; my hair is naturally pure white, fine and dry.
But now have my hair dresser color it again in a dark blond base and platinum highlights. But don't do it too often. Scalp massage helps move oxygenated blood to scalp; feels good too
Hope this was helpful. But consistency is key. You have alot of replies.so I am sure you got other good advice.
Before anyone panics - it is normal to lose IRO 50-100 hairs per day, not just 10!!!
And much as I'd like to agree - if you want iron rich foods, you may pass on the spinach (I like it). It is good for calcium and vit K but the spinach story was due to a misplaced decimal point! Ironically (sorry) there is oxalic acid in spinach - and that blocks the absorption of the bit of iron that IS in it.
What ever happened to Popeye, the sailor man?
He was conned!
But hair loss occurs all day, not just in the shower, although there is more there than average ...
I left out a 0. Sorry. However, I have never seen anywhere near 100 strands in the shower, not even close to 20 when my hair was at its worst. We are all different, aren't we?
Thanks for the advice. I will only consider AA again if I get a bone scan and they prove I need it. I have never broken a bone and I have had lots of falls. Natural falls through activities not because I fall over. We have a narrow boat and I often have to make a big jump where mooring is difficult. I can jump and roll really well despite the aches and pains. I have lightened my hair since I was sixteen and am currently pink. ( just been to a festival) My hair is great only time I had trouble was on AA. I know people don't wash their hair but I cannot live without standing under the shower to to wake up and shower caps don't do it for me. However I condition every day and use shampoo every third day and I only use Lush solid shampoo and conditioner. No plastics.
Yes; only use the best hair care products if possible. Some are too expensive I think. .My husband used to joke that all shampoos come out of the same vat and it made no difference what shampoo you used. I don't think he was joking on 2nd thought. That's a man for you.
I don't use conditioner anymore; makes my hair too fine, it is naturally fine, but now dense again. I don't blow dry either; natural air drying works best for me. ; a little gel; finger comb, and ready to go.
But I do use a good "organic" shampoo ; great for dry hair. Castor Oil and Shea butter are the main ingredients. . A long while ago, my hairdresser said "What happened to your bangs?" He was right; they became so thin that they did disappear. They are back , but they are wispy which is my style. (not the thick straight bangs of my childhood.)
The type of water makes a difference too . My water is well water and highly mineralized. Now and then I use a deep cleansing shampoo which seems to remove the the minerals. I could have a filter installed on the shower head, but probably not motivated enough.
I agree about not using conditioner; makes my hair too soft and fine. If you can, air drying is better than blow drying; I realize some people in certain seasons may be in a rush and need to blow dry. Any curling irons, straigtening irons are not good for hair, but some insist on them.
When I was working, I was the same; head had to be under shower and shampooed immediately upon arising. But now I need 2 + hours in the morning before I can get into a shower.. Any appts., I try to make later in the day. Physio-therapy is always at 2:30 pm in my hometown.
Only OH has fallen in and he is fully fit!!!!
Lots of hair supplements now available.. mostly with biotin and folic acid. I take one called HairForce. My hair has come back. I also use shampoo with biotin. I have also heard gentle scalp massage to keep blood flowing. I don’t know if that is true, but it feels nice,
Thanks so much everyone. Really do appreciate all your input.
Thanks for that ray of hope. Luckily I havent had a problem with facial hair (unless thats yet to come) but easier to cope with removing it than the other way round.
Don't know your age, but facial hair is a problem. But when we think of evolution, women did have facial hair through the various stages of evolving. I think our creator did intend for us to have facial hair! That proves that women are equal or superior to men.?!
My hair became very thin (didn't have an abundance to start with) so I stopped using conditioner on the advice of my hairdresser which helped a bit. Then I heard of the Manta hairbrush which was invented by a hairdresser for his wife who had cancer and who suffered hair loss. It is wonderful. Don't know how it works but now, there is very little, if any, hair in the brush after I've used it - it's all still on my head! My hair is better than it ever was, even pre-pmr. You can get them on Amazon and a certain shopping channel (quite very convenient!). If you get it from the latter, you can send it back if it doesn't work for you.
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