I know it’s seen as vane, but I’m fast approaching baldness at the rate I’m losing my hair. On a more practical note it’s going to be chilly next winter. I’m supplementing with Folic acid, Biotin, Collagen and several more advised nutritional additives but still no improvement in my hair loss. Does anyone know of any magic potions which may help. ? X
Hair loss: I know it’s seen as vane, but I’m fast... - PMRGCAuk
Hair loss
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Pandora2
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Ask for a referral to a dermatologist.
There are specialist hair loss clinics but they all seem expensive. Just put specialist hair clinics in your search and have a read up.
Hi Pandora - what dose of Pred are you on & are you on other Meds as well?
I lost all my hair after Chemo so l know how you feel & l had hair thinning on Pred before that.
I’m on MTX now so that impedes my hair growth however, l’m still here so wearing a wig is a relatively small price to pay 😉 plus my hair always looks good 💁🏻
I’ve tried every shampoo - serum - snake oil & supplements. The one thing l haven't tried is Minoxidil (a blood pressure medication originally) l decided against that due to its side effects plus if you stop using it the hair goes back to as it was.
If you want any info on Wigs - l’m your girl 💁🏼💁🏻
Thanks Mrs N…. I’m now on 5.5mg Prednisolone down from 15mg 7 months ago, but I’ve had a rushed taper ( Drs fault) in between. I take several other drugs including Ursodoxacholic acid for PBC, Amitriptyline for Fibromyalgia, Dihydracodein for spinal DDD. I’m fortunate in that I had a good head of hair to start with so don’t need a wig just yet, but at the present rate of shedding it won’t be long. However I’ve always admired how lovely wigs can look so if needs must! Thanks for your kind reply. I also admire your wonderful work on this site. X
I have sclerosing alopecia in which my immune system has damaged my hair follicles. This is getting progressively worse and I now have about a fifth of my hair left now which is in an unsightly clump at the back of the crown. I use a wig if going out but because I have to use hearing aids, glasses and, these days, a wig I have so many 'thiings' behind my ears, that I get very bad headaches (I'm prone to the anyway). At home and in the garden I wear a stretchy bandana, and if it's sunny a 'baseball' type cap over that. I am not normally vain but there are odd moments when I wish, oh I wish, that I had my hair back. As you say, Mrs N, we are here and it is a relatively small price to pay for that. PS. My hair loss has not been in patches. Take care, Knip.
Hi Knip - it’s quite a palaver getting all the extra bits added before we go out n about isn’t it! Have you tried adjusting the bands on your wig - even just a tiny bit as that might take the pressure off your head & reduce the headaches.
Take Care
MrsN
There is an autoimmune disease called Lichen Planopilaris, a form of scarring alopecia, which I was diagnosed with in 2010. It causes bald patches and the scarring is permanent, so the sooner you get treatment the more hair you will keep. It is quite devastating to accept at first, but like all autoimmune diseases (I have 3 so far, counting GCA and PMR as one) you learn to get on with it. I was first prescribed Plaquenil but I had a bad reaction to it, so took Methotrexate for 5 years and since then have had no more treatment or support.. I am able to ignore thin patches on my scalp now - on balance GCA/ PMR impacts life far more. I hope you can get medical advice to rule this out or start treatment.
Hi Pandora2,
Others may have found remedies that work for them but unfortunately, scalp hair loss can be a side effect of the steroids.
After 3yrs on Prednisolone, I now have much finer hair and much less scalp hair than pre steroids. The flip side of that coin is that the steroids can also cause extra hair growth where you don't particularly want it... ie. 'peach fuzz' on face & cheeks.
I personally have not wanted to add further complications to an already complex condition by adding 'restorative' shampoos, supplements or other treatments etc into the mix.
I do however use gentle, natural hair products that don't contain parabens, nitrates or sulfates. I try not to wash my hair too frequently....no more than twice a week....I have my hair trimmed regularly, eat a healthy diet, and enjoy a monthly (gentle) Indian head massage which stimulates the blood supply to the scalp.
These interventions definitely seem to contribute to keeping my hair and scalp as healthy as possible and seem to work for me.
Others will of course have discovered different regimes that work for them.
For most people though, the hope is that on lower steroid doses, hair condition should improve and slowly return to its former state, and although it's frustrating and disconcerting at the time, sometimes 'less is more' where intervening is concerned.
This is obviously my own personal opinion and others may have different experiences to share with you.
I hope you eventually find your own regime though that brings you closer to achieving a positive outcome too.
Thank you Kendrew….I think if I had been younger I would have been more upset but as it is I think the relief of the dreadful pain of PMR is a fair exchange, especially if the thinning reduces with the Prednisolone, and may even grow back curly as some mention. I’m going to try the scalp massage you mention before buying a wig. X
I'm currently on 5mg of pred and have also noticed that my hair has gone from being completely straight with not a kink, wave or curl in sight to now drying naturally with a distinctly visible wave/curl.
Wow, it’s true then!! X
DorsetLadyPMRGCAuk volunteer
Nothing magical -but this might help a little -healthunlocked.com/pmrgcauk...
I think you may find that the supplements that you are taking may be helping the suppliers coffers more than they are you. They reckon well over 95% of supplements bought are of no help although some do have a placebo effect which I suppose is good news. Some in fact are bad news and can cause harm.
Thank you Piglette… Most-of the supplements I take are in an effort to cope with my osteopenia which is of course is much more important and hopefully helping my bones. I’m only taking a couple more for the hair problem so not much more expense and maybe backing the placebo effect. X
For bone thinning the single most important supplement (after Vitamin D of course) is Vitamin K2 (not K1) as it is the vitamin which directs calcium to the bones, where you want it to go, rather than settling unhelpfully onto the walls of blood vessels and into organs.
Thank you HeronNS …I have been taking Vit K2 for a few weeks now, I really don’t want to have to take Biphosphates ( hope that’s spelled right) so doing all I can to protect my bones naturally until someone persuades me otherwise. X
Glad to hear it. Now, bisphosphonates are probably a lot less problematic than the newer drugs like prolia, but if you can avoid taking any osteoporosis medication that is best. But it really does depend on your own risks and whether you have already had any fractures. Generally speaking bone medication is not necessary for people with "only" osteopenia, which is not a disease but simply a name for loss of bone mass, quite normal as we age, but important to keep the process as slow as possible so that we never become truly fragile. If you find doind all the natural stuff, including appropriate exercise, doesn;t seem to help then you must insist on tests to find out why. But I hope you see improvement. A number of us have, so the outlook is encouraging. All the best!
Thank you for that HeronNS….The result of my Dexa scan was that the bone loss was normal for my age ( I’m almost 80) but AA was recommended because of the Prednisolone. I’ve maximised the calcium in my diet and take all supplements recommended. I’m quite a bit more active now that I don’t have the awful pain of PMR. I’ve even wondered whether I should pay for a private Dexa after a year if I’m not offered one by my doctors. X
Sorry for the late response. Just read your post. Why do you not recommend bisphosphonates for osteoporosis. I was diagnosed last year after having a parathyroid adenoma removed. I have severe calcium residue because of going undiagnosed for 8 years. When my Endocrinologist diagnosed after the Dexa scan, spinal surgeries and both shoulders being fractured recommended the bisphosphonates and calcium and D3 supplements. I was also concerned he didn't inform me of the importance of K2 especially because of my ongoing distribution of the calcium. I learned that on this site. I am now having possible GCA on top of PMR.After a negative arterial biopsy for GCA I have been diagnosed with a rare complication of Medial calcific sclerosis. Which is a buildup of calcium in the left arterial artery. I have ongoing GCA symptoms and on a high dose of prednisolone. Both my Endocrinologist and Rheumatologist recommend the bisphosphonates. Any additional information on this topic would be very much appreciated. I have learned more information here than from all the Drs. Thank you.
I imagine they are recommending them to redirect the calcium from the tissue to the bones - they use bisphosphonates in breast cancer for a similar reason. But it is something you must ask them - it isn't something we come across so you need the experts.
bonehealthandosteoporosis.org/
seems to be the equivalent in the USA for the ROS in the UK which has a helpline to answer questions. Maybe contact them?
I need to schedule my mammogram soon. With Covid everything has been delayed.Didn't realize the connection with bisphosphonates. As always valuable info. Thanks.
I can update you further on that pomeranion but it’ll be in morning (l’ve had that treatment)
Look forward to the morning. Have a restful night. You have been such a reliable resource. Thank you,
Just a bit of additional information on Bisphosphonates eg Alendronic Acid
Background Information -
In 2015 l was diagnosed with Triple Negative Breast Cancer (TNBC) there are different types of BC with TNBC being the most aggressive & unfortunately there are no adjuvant treatments after Chemotherapy and Surgery plus there is a high risk of it recurring & spreading.
However, back around the time l was diagnosed there was a Trial coming to an end that my oncologist was involved in. Historically, they noted that some women with TNBC went on to develop Secondary Cancer in their Bones & others didn’t? They found that by enlarge the women who didn’t develop Secondary Bone Cancer were already on Bisphosphonate for Osteoporosis so ultimately it was decided that Post Menopausal Women with TNBC were started on a Two Year Course of Zolendonic Acid (by Infusion) however, during my course that was increased to three years making six infusions in total.
So sometimes drugs can be used for different reasons so we always need to ask why to know we have the full picture……
I have yet to schedule my mammogram after delay because of Covid. I don't believe I have had Covid. I'm so sorry to hear about your (TNBC). I've never heard of it. Did you have the Chemotherapy and Surgery? My Drs. want me to have the Zoledronic Acid (by infusion) because of my Osteoporosis diagnosis. I have put it off because of my ongoing unresolved PMR pain. Now I am exploring GCA with all the complications and symptoms. Not officially diagnosed yet. I am on 75mgs. prednisolone and just started to get relief this morning. Feeling much better. Even PMR better (shoulders and arms). I realize it is a high dose. I am concerned my Rheumatologist will have a problem with my dosage as he believes I probably don't have GCA. But the resolution of my symptoms may indicate some. When we last talked he wanted me to return to 9mgs. prednisolone which I was on before the GCA scare. As my ultrasound and arterial biopsy was negative. Tried reducing to 24mgs. with no relief I have the complication of Medial Calcific Sclerosis. Very rare outcome because of Parathyroid Adenoma with resulting Calcification. Therefore I have Osteoporosis. Because of his recommendation of steroid reduction he says now I don't need the Tocilizumab we had discussed. I have an appointment May 11th. with my Endocrinologist who initially recommended the Zoledronic infusion. With my hypothyroidism and him treating me for Osteoporosis. I hope to get additional information from both him and my Rheumatologist on both the Tocilizumab and Zoledronic Acid. As you can see I have various complications and many decisions ahead of me. You have offered valuable information and insight. I hope I'm able to get a whole picture. KNOWLEDGE IS POWER!! Did you experience additional pain with having PMR and the infusions? Some of my research has nightmare stories.It seems it will be a long haul 2-3 years as in your case. I am really stressed and depressed. Which is not helping my PMR and possible GCA. I truly value all the information and compassion I receive here. Thank you for your attention to my concerns. Sorry so long winded.
Hi ~ TNBC is not a ‘Hormone Driven’ Cancer hence it won’t respond to Tamoxifen or the like - which is the BC most people have heard about.
Zolendronic Acid - yes again it has a ‘bad press’ re pain, ‘flu like symptoms etc. My first Infusion was so unremarkable l thought they’d forgotten to add it to the drip but it continued that way for all six but l had just come through Multiple Rounds of Chemotherapy & the last session nearly saw the end of me (& that is not an exaggeration!)
I hope you can get the answers you’re looking for & the correct regime of Medication from your Consultants.
Best Wishes
MrsNails.
I have my Mammogram on Tuesday - always an unsettling time as you never know - that plus Bone Pain always makes me twitchy until we have the results 🙏🏼
Bone Pain? Please enlighten me. I know it will be uncomfortable what with the
PMR. Haven't had a mammogram since before PMR. Good luck on Tuesday. You will be in my prayers.
I don't recommend it for people who are in the same or similar situation as I am which is - "osteopenia" only, no true fragility fractures, and health which is good enough to allow them to exercise and obtain the nutrients ncessary for bone rebuilding. This is why I posted my complete story, including how I learned to look after my skeleton! I happen to have heard the stories of some who have been diagnosed with osteoporosis and worse t-score, still doing well without medication, but this is something everyone has to decide for themsleves. I just want people to know that medication is not necessarily the only, and sometimes not the best, option.
healthunlocked.com/pmrgcauk...
Glad to hear you are doing well without medication. I wish this was true for so many.I agree sometimes medication is not the only option, I wish you continued good luck with your skeleton and your life.
In a mythical ideal world we'd all be taught early in life how to keep our bones healthy, just like we're told about the dangers of smoking. how to reduce risk of type two diabetes, the signs of stroke, importance of exercise for cardiovascular health. Never a word mentioned about the frame on which everything else hangs!
So True!
HeronNS is a world authority on osteoporosis in my opinion. She is really helpful.
Dont despair too quickly. Like you I had thick hair and lost so much once on steroids that I ended up with some balding patches and any new growth that came through was very fine and wispy. I spent a fortune on a wig thinking I might need it for my daughters wedding but it has stayed in the packaging…. Hair growth goes through several stages and once the shedding stage was finished although my hair was very thin I could still get away without it looking too silly . Since then with all the new growth that has come through and with a gradual lowering of my Prednisolone dosage it is thickening up nicely again. I did go to see a specialist who told me that the type of Alopecia caused by medication is generally confined to thinning rather than bald patches (although I did end up with a few small ones).
Thank you Jaycee…. I’m down to 5.5 Pred at the moment but have recently read that the hair loss may be due to PMR itself or the shock of any punishing event. The article suggests that you look back 2 or 3 months for anything which may have instigated it. I had a terrible time 3 months ago when my doctor messed my dosage up and it made me very I’ll. I have been following the advice of the learned ladies on this site ever since.. X
I wonder how much Folic Acid you're taking. I didn't stop losing hair until I was on 5mg x 6 days a week. Just a thought.
My hair loss has started now that I am on a lower dose of pred. I read somewhere that suppressed adrenals were the problem.
I’m taking just one tablet of folic acid 400mcg daily and down to 5.5 mg prednisolone. Maybe it’ll get better the next time I reduce. Here’s hoping. X
I'd ask about increasing the Folic Acid if I were you . It really helped. Good luck with whatever you decide 👍
👍🏼
My hair was falling out really badly when I was on a high dose, I tried lots of different shampoos and vitimins, nothing worked until I started taking something called Absolute Collagen, it's a bit pricey but it definitely worked for me, it takes a couple of months to kick in but my hair is thicker now than its ever been.
Good morning PandoraI also suffer from hair loss. I am 66yrs old see old & have other health conditions as well as PMR (Non Hodgkin Lymphoma & Type 2 Diabetes).
I am currently taking 5.5mg pred (as well as a cocktail of other meds).
My hair loss was getting quite significant but it has improved greatly after using a shampoo called Plantur 39, which contains caffeine and apparently stimulates hair growth. I has certainly helped me, I still have some hair loss, but it’s much improved and lots of new growth.
Keep on keeping on 
X
I use the Brown Plantur 39 Shampoo & Conditioner as l am ever hopeful of some improvement in my hair & it does lift the grey & colourless hair……
Strangely enough iv just bought a bottle of caffeine shampoo this afternoon. Obviously great minds think alike!! I’ll give it a try. X
Oh that’s interesting. Will look into that. I’m on 10mg down from 15 in July and I’ve definitely had hair loss! But what there is is curlier!!!
I'm in the same boat...the second time around...now have bald patches. If I have to meet people I have some long stretchy scarves in bright colors (from Kettlewell) and I do a double wrap (like the front part of a turban, add some dangly earrings)BTW please save your money on supplements...the body needs collagen but it makes its own (it doesn't absorb it ready-made from creams or from supplements...it breaks down proteins (such as collagen supplements) and builds them into the proteins it needs. Biotin is in loads of foods...you really aren't likely to be deficient. Vitamin D3 and K7 are really the only supplements to take.
Hope you get a bundle of curls (if you fancy that) in a few months when it might grow back - life is full of surprises
Have you been taking the folic acid for long? When I was on the very high doses of pred my hair was falling out too. I started using a shower comb with large teeth so I wouldn’t pull out what was left. I went on folic acid after reading a fellow post and it took about six months ( and reducing pred) to get back to anything like normal. My hair is now ok but I still take folic acid every day.Good luck. I know how upsetting it is .
Thanks Bleakley1…. I must be more patient, I’ve only been taking folic acid for a few weeks, I’m almost due for another Pred reduction so maybe everything will come together and solve the problem… thank you. X
By the way another benefit of folic acid is stronger nails too and they will grow quite quickly. Good luck.
Seemed to slow down as pred reduced and my hair is back to normal on 6 mg
It’s nice to know this thing is reversible in time. Thanks so much. X
I find it interesting to read all these comments, because I was losing hair a lot for about 5 years, filling up my hairbrush all the time and it got very wispy and fly-away. I had tried biotin and other supplements, fancy shampoo and oils to no effect. Then PMR and GCA diagnosed and I was put on 40mg pred. The hair loss stopped, I started to get my lovely thick curls back. Now I'm down to 10mg the hair loss is back with a vengeance. No bald patches or scabs etc, just all over shedding. My hairs get everywhere, in my food, down my bra (very irritating), all over my pillow, blocked plug hole in the shower, etc...!Any clues anyone?
I had been losing hair for a long time - obviously I had had PMR for 5 years but i think it had started before that and I think it is all going on long before we notice. It improved on pred, was awful for a few months with TMX (came out in clumps within days) but is back to very thick and wavy again. It is frizzy when shorter but smoothes out with the weight as it gets longer. But hair does change texture as we age too - and mine dried out a lot once I was totally white.
I was depressed about constant hair loss. I even found stray hairs in my mouth in bed. I use Kevin Murphy volume increasing products . They’re quite expensive but you need very little. I also put a few drops of essential oil called Hair Envy into my conditioner. I’ve seen a great difference and the wigs I bought are now , thankfully, lying in boxes unused. Maybe worth a try ? My hair is almost back to normal, but I’m now on 2.5 mg Prednisolone for GCA , which I’ve had for almost 3 years. As I reduced, I noticed thinning again- but thankfully it seems to have ceased. Hopefully this helps, as there is nothing more dispiriting than hair loss.
Pandora - l forgot to mention l use ‘Brown’ Planture39 Shampoo & Conditioner & it does improve the colour & condition of my hair. I’m going to add this Post in FAQ’s because it contains lots of information ℹ️
Silica May help
Hi PandoraThere are two products which I have been using and that is Waterman’s Grow Me shampoo and Nioxin . It’s early days but I find them so far so good . One thing I do do is to wash my hair in cold water .
I did ask my rheumatologist why she prescribed me 5 mg of folic acid for 6 days a week rather than the 5mg a week and she said it was because of my hair .
Good luck
Are you on MTX as well?
Yes I’m on methotrexate and really been a game changer for me . Now back playing competitive tennis. Have reduced my steroids to 2.5 .Interesting it was the folic acid which made me feel nauseous at the beginning not the methotrexate .
Very interesting, thank you…X
I have been on pred for many years. I take a vitamin and mineral suppliment every day. I think it really helps with my nails and hair, which is very thick. Calcium and vitamin D are essential for our bone strength, but I think they also are important for good hair. Incidentally, my once poker straight hair now falls in waves if I leave it to dry naturally.
This is Mimi my cat. Rescued 3 years ago from the RSPCA.
Do not feel vane about losing your hair. It is something we all identify ourselves with and therefor effects us deeply. Women are especially vulnerable to these feelings because of society's expectations of us. I lost most of my hair back in my 40s from alepacia areata. Most has grown back but I keep getting more bald spots. The one thing that angers me the most is when a man tries to compare his balding head to mine. Society accepts men with hair loss but harshly judges females.
Hi Pandora,I found that an untreated flare that went on for 3-4 months preceded my alopecia. By "untreated", I mean I did not increase my steroids. When 3 bald patches appeared, I finally gave in and went up on the steroids. My dermatologist also did steroid injections in the bald spots and prescribed Men's Rogaine twice a day. All of the hair in the bald spots came back.
More recently, I had another flare. This time I went up on my steroids sooner. I still lost hair some hair, but nothing like before - just some thinning. I'm resuming the Rogaine and am hopeful the thin areas will fill in since I went up on the steroids sooner.
For me, it seems the increased systemic inflammation that occurs during a flare attacks my hair follicles. As others have mentioned that the steroids can cause hair thinning. However, I have found that when my PMR is not kept in check, I have a dramatic sudden increase in hair coming out in the shower. It is a delicate balance we need to strike
Good luck!
Thank you that’s very interesting in all sorts of ways. It seems to be a fine balance in so many aspects. I am trying to reduce Pred as much as pain allows and to encourage adrenals to reawaken whilst juggling with other aspects of doing so, the hair factor may well be one of them as others have reported a re growth when increasing dosage. Maybe there’s an algorithm to tackle this. X
Thank you Ctorres…….I don’t think I’m quite there yet for this sort of treatment and my hair loss seems to be slowing somewhat so I’m hoping I may have got over the worst of it . Was getting a bit worried though. I’m so glad you found the answer to your problem, it’s so dispiriting in amongst all the other afflictions PMR presents us with.isn’t it ? X
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