Sorry me again. Just looking for advice on hair. I have been taking steriods pred for just over a year and from 10 months onwards my hair has been absolutely terrible. It’s dry, like straw, just literally breaking off, really thinned and extremely dull and lifeless 🙃 does pred do this snd is there any vitamins or recommendations please ? I started at 15mg then went up to 30 mg then gradually come down over the last year now on 8mg. My iron is low so have just started iron tablets as I read this can add to the problem.
Thank you for reading x
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TMenz
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Plenty of related posts on this subject. On right hand side on most devices, or a bottom of posts if on iPhone. ....or just type in “Hair” in search box.
I had straight, shoulder length, greasy hair. It became dry and looked like a hay stack with pred. I tried every thing on the market. In the end I had it cut very short and it looked quite funky and people kept saying how nice it was. It is improving now at a lower dose of pred.
Probably around 5mg it started to look better. It did become curly and dry, it's still curly but in slightly better shape than it was. I always wanted curly hair.
My sequence of hair from diagnosis (60mg) to zero, from 3 months is something like - luscious, moth eaten (fell out), grew back to thin, mad scientist, ok, could feed it to cattle, back to moth eaten, back to mad scientist, really rather nice with tasteful curls, back to normal ( neither straight nor curly with one side that kinks) but a bit thinner. Who knows what the future holds. The moral of this sad tale is, that whatever you’ve got now, it’s temporary, keep an open mind!
you do make me smile. it's a toss up every morning whether i look like shrek or worzel gummage. can't wash my own hair as neck shoulder pain pmr 8mg pred, hubby helps, i look like i been flung in the river when he's finished and bathroom floor and slippers soaked, eyes red and sore from shampoo, and when he blow dries y thin scraggy hair, look ike a monet painting.... a big scuffy haystack .. he thinks its funny, his days are numbered... sorry rubbish typing pain neck shoulder so lower case...
Rest assured that you have caused me to have the biggest belly laugh for ages which has done me a power of good. I am now ready to face the day with my Sonic the Hedgehog hair and it's 'only' 1 o'clock in the afternoon!
My fine short hair was just as you describe yours to be, and in one of the posts about this hair problem a few months back, someone passed on a recommendation from their hairdresser to use a keratin shampoo and conditioner. I am now using these, plus a night hair serum (when I think about it), and my hair condition quite quickly improved, plus started to grow again rather than breaking. I recently had my first trim for 6 months.
Thank you funny I just stole my teenagers new shampoo and conditioner and thought wow that’s the best my hair has been still breakages showing obviously but silkier and yes it has keratin in 🙏🏻hopefully it will improve with every wash👍🏻
More like once a fortnight for me if it is lucky!! When Thor Heyerdahl went to Fatu Hiva with his new wife (as in eponymous book) they decided to not wash at all and found that the skin was able to renew and clean itself - at least that his story and I am sticking to it!!
I didn't like to mention mine gets washed every 3 weeks - if it doesn't look as if it will last another week. People seem to think it is awful - same as not using soap or deodorant, You have to get there in the first place - but I think it is worth it!
I think I veer definitely more in the 3 week direction but didn't want to shock our readers!!! Certainly saves time and shampoo. Will take note of Keratin products though as the bush that greets me every morning makes me look like a giant toothbrush!!
I used a shampoo from the Shea Moisture range last night and couldn’t believe the difference so hope it continues. It does have keratin in which is what people are advising on this group. This shampoo is actually for black hair, I have fair thin hair. But black hair is course and dry so I suppose it makes sense that this might be good for us to put some moisture back in. I’ll continue and let you know. It’s sulphate free too and only costs about 6.00 for a good size bottle so worth a try. My child’s hair is ultra curly so she has always used products for black hair and works brilliantly . I used Shea moisture Manuka honey and yogurt hydrate and repair shampoo.
I will try the recommendation below too for the Eurofa thickening range, Thank you .
I have also ordered Viviscal supplements which contain biotin and zinc.
Gosh hope my eyebrows don’t go too yikes 😳 🤦🏼♀️haha
I'm using Keratin Complex shampoo and conditioner which is the better of the sample products I tried - I wash my hair at least weekly (have to because I sweat a lot😅). When my hair was at it's worst, I also used Kerastase 8H Night Serum nightly for a few weeks. It is expensive but this was like the added secret weapon, which made me feel my hair could be 'normal' again - which it now is a few months later.
My straight hair didn't become curly as many have found though 😂
Low iron is a feature of chronic illness - and the way to manage it is not always iron. It is more complicated than that. Did you check with your doctor?
My hair went nuts - but has recovered and is acceptable at 15mg. Patience - as with everything here.
Well I ring up for blood test results and receptionist always says “been checked by a doctor and nothing is flagged” just gets on my nerves 😟 my iron is always around 115 116 always sleepy and constantly lethargic but because it is ‘within’ range it’s classed as fine. Even though sufficient range probably starts from 115 lol so I’m always at the bottom. I read on here iron is measured in four parts and I need to get results for them is that correct ? If so what are the four parts?.
Yes I need patience but seriously thought I had a virus and it would do one🙈 how wrong was i, if it’s not bad enough we get all this pain we can lose hair too 🤦🏼♀️I learn something new everyday. But it could be worse I suppose I shouldnt complain x
No good advice. I just know.my physical therapist always told me a year or so ago how beautiful and soft my white hair is and what beautiful skin I have. Well now she never says that and I look like a mad scientist. 😁 Had to put this behind me though. Afterall, for the most part, I'm not the one that has to look at it all day.🤗
Yes many of us have been there and suddenly got curls too.Experiment with volumising shampoos and conditioners and leave in oils and products to scrunch your hair into shape. A good cut helped but that’s out, so I use pretty hairbands and bulldog clips and hair slides. I like Kevin Murphy products for curls - expensive, but natural and effective.
I started on 15mg prednisolone last August, reduced to 10mg after 3 weeks, reduced to 7.5mg after another 4 weeks. I will be staying on this dose for up to two years. My hair didn't exactly fall out, but there was more hair loss than usual when I washed it. It also felt lifeless and dry. In September I started taking a biotin supplement - 10,000 mcg. I was warned that it could take up to 6 months to see any results but I have to say that I started noticing the difference in late December. My hair has never been thick by any means but it's looking and feeling a lot healthier. Due to lock down I couldn't visit a hairdresser so I gave myself a good trim (nearly dislocated my shoulders layering the back!!) and it's so much better. All the best.....
My hairdresser recommended hair products containing Keratin. He advised using the shampoo and conditioner twice a week. It has worked for me. My hair is now soft and shiny and the thinning seems to have stopped. I hope this helps.
It seems quite perplexing to me that my scalp hair has thinned but some body hair increased!!!..... like 'peach fuzz' on face, and the fine hair on arms and backs of hands! You'd think all the hair follicles would react the same??
It does and if you ever get a headache, spread your fingers through your hair and gently tug. This takes away the tension................bit like Shiatsu. My hairdressers assistants were all taught to do this massage when washing clients hair.
Hello TMenz, sorry to hear about your hair. Unfortunately just another addition to our PMR Pred journey. I've been losing my hair for a few years, even before my PMR/GCA started. My SANTA look alike hair and beard, is now 20% black hair. It started to happen when I got below 10mg Pred, on 8 and a half now. Oh well, just got to be different. Trevor.
Strangely enough I have noticed that some of the hair regrowth (I lost a lot over 18 months albeit in a diffuse manner) is very dark. This is strange as I am in my mid seventies and have been snowy white for a while. The new growth also came in curly but looks a bit like a bad perm so I’m not exactly in love with it.
Hello Alchemy8, I must have given the impression that I was the bearded lady, as there seems to be a shortage of men on here. If I made a few on here smile, I hope they feel better for it. Trevor.
Thank you, I shall keep them in reserve. I am not in any pain really as I am trying to keep on top of it but just getting odd cramps. Possibly some soreness on the back today (I was carrying weights on my walk today - another brilliant suggestion that came through this website for helping bone density) though you may laugh - I ended up ordering a 20k vest that I could hardly lift off the floor when it first arrived. Am I mad?? A question of not really being able to correlate what actual weights feel like. Can I blame the pred. I think not this time 🤔!!
my doctor said over and over that pred will not cause hair loss, but everyone I have spoken to on this forum agrees, your hair becomes like straw, brittle and falls out. I take collagen, iron pills and about 8 months in I started using minoxidil, but that means you need to continue that one for life. I am glad I did, because my hair stopped falling out at the rapid rate it was and now it seems to have stabilized and I have seen my cousins hair after two yrs on pred., she has barely any hair at all; whereas mine still looks full, I don't have the great thickness I once had though, so that is sad. Oh yes, it's been about 2 yrs for me with pred and I started on a very high dosage and now down to 4mg
Often though in PMR/GCA it is the illness that leads to the hair loss - but the effect isn't noticed for some months. I lost hair with PMR - definitely wasn't due to pred because I wasn't on it at the time. And it has improved with first prednisolone and now prednisone. In between I took methyl prednisolone for about 9 months - and that was a continuous bad hair day, frizzy, dry and it didn't grow. I also grew a magnificent black beard - despite my head hair having been white for 25 years. The nape hair is still frizzy when it is short so I have used lockdown to grow it out - we'll see what comes next.
Encouraging info from the pharmacist. Hope springs eternal!I've laughed so much today and thank you all for your comments. My mind has boggled with some of the graphic descriptions. The 'magnificent black beard' nearly finished me off!
Mine thinned and went dry (from previously being oily), however I started taking biotin about a year ago and I noted improvement. It certainly grows faster now, and I only colour it a couple times per year, and only wash it about once per week. It is still thinner than my pre-PMR hair, but better than my early days on pred. As PMRpro mentioned, the hair at the nape of my neck tends to be frizzy however this could be from sweating nightly in that area.
It is discouraging at times to see the “new me” hair wise, but my hair changes are manageable (like the night sweats and skin bruising). Thankful I don’t have some of the other more serious side effects of PMR and pred.
Oh funny my hair is also extra and ultra frizzy at the neck and I have the most biggest bruises ever! My whole elbow went black along with quarter of my arm and I don’t remember hitting it then two weeks later same elbow went an abnormal shape it freaked me out and I don’t remember hitting it at all again. It looked so weird i had this big ball type inflammation hanging so I went A and E. it was olecranon bursitis. 🤣 so it seems some of it is the joys of pred and/PMR . The comments on this post have made me laugh though. Thanks everyone
A while back someone had suggested: brushing, massaging the scap to get the blood flowing and pulling on the hair very gently....I've been doing this for several months and have noticed an improvement....I have been off pred for several years though....so that has added to the healthiness of my hair, IMHO.
Now, those were ALL good comments and each is worth noting; my rheumy had also said that it "could be the disease itself" rather than the Pred. In any event, like others, just whacked it down low and have never had short hair in my life. Don't mind it so much now. No gimmicks and is growing back curlier & soft.
After 2 1/2 years on high dose prednisone my hair is much thinner and so VERY dry. Sounds terrible but I only wash it every 3-4 weeks, more because I think my scalp needs a wash rather than my hair. I’ve stopped having it coloured as I don’t think I need the chemicals in my life... I quite like the grey. When I wash it I only use a very small amount of mild shampoo. I have a trim every 6-8 weeks to get rid of the fuzzy ends and don’t heat stress my hair with blow drying anymore. I mourn the loss of my old hair, but I want all of my old life / old body back not just the hair... one day maybe.
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