I’m sorry to ask again but it seems after 6 months of being on pred all the wheels seem to be falling off, I’ve noticed my hair is falling out, not masses but def more than usual, I have really thick hair and has always been important to me, is this something that happens on pred?
Also I’m away at the moment and can’t think of I’ve taken my pred today, should be 15mg, I know crazy but I really can’t say I have or I haven’t, think I’m loosing the plot, will I be ok to leave it and take earlier tomorrow morning, thank you
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People always blame the Pred -and some change can be down to that, it certainly can and does change some aspects - curlier, drier, more unruly -but thinning is just as likely to be the illness itself .
Thank you, crazy gaining hair everywhere else, but now coming out on my head, will just keep an eye on it. So if I take 7and a half would hopefully keep me balanced, I feel ok at the moment, what effects if I didn’t take a dose until tomorrow, would it cause a flair or would I feel ill, sorry I know I sound really stupid with all of this, but a lot seems to of kicked in with all of this over the last couple of weeks, will have a look at the link thank you
Thank you, I’ve just taken 5mg, tgen will take normal 15mg in the morning, I’ve been on 17 and a half and 15 alternative days, starting as of tomorrow on just 15mg hopefully no flairs from that and then hopefully taper down, I have read the link on hair and it really makes sense, like most on here have had a lot of stress over the last few years and esp the last few months so it makes sense
Enjoy your holiday -and when you get back maybe think about getting a dosette box. Sort your tablets for the week on a quiet afternoon -and then you can easily see what you’ve taken and what you haven’t…
I wouldn’t have started tapering whilst away, or just before - best to wait until you get back home …not usually a good idea to do it when on holiday….
Hair loss is one of Omeprazole's side effects, and other meds too. Ageing and Pred also contribute. People are lucky if they have thick hair to start with. If it's thin and fine naturally it will show more and be more difficult to style and keep tidy. Take heart and reduce VERY SLOWLY. Good luck!
I had a brief moult at the beginning, shortly after diagnosis and on 20 mg, thick hair combing out in handfuls. It passed and today 3 years later I have the same mop I always had. My mother called it the thatch.
Ah thank you that made me laugh, I too have a mop, used to be thick golden hair, now still thick but not so golden, will just keep an eye on it, am tapering down at the moment so hopefully it’s only temporary, I’m growing hair everywhere else! Thank you for making me smile
As you say hair everywhere it should not be and not where it should be! My hair turned into a haystack after a few months of steroids. It was shoulder length. I spent a fortune on absolutely every conceivable concoction available. In the end I got my hair cut very short so it just stuck up like a punk and everyone said how young I looked.
I will keep everything crossed that it’s just a blip, I’m keeping my fingers crossed that I will be able to taper down, all the side effects have all hit me at once and it’s been a bit overwhelming, I always get compliments on my hair, even with my big fat face lol, I’ve got so much of it so hopefully it’s temporary, it’s just coming to terms with all of these things, thank you for replying
That happened to me too. I used to have greasy hair that needed washing every other day, and my fringe every day. Then about three months ago it suddenly started to break off where it was dyed and was getting wiry and sticking up. Obviously the coloured ends were getting more sparse. I've stopped dying my hair and will let it grow out naturally, but there are days when it just looks like greying candy-floss.
I think my fat face is making me look younger. 🤪 I keep getting compliments on how good I look. (Half the time I’ve been weeping for my late son plus I quit wearing make-up.). Ain’t life strange.
Yes...Piglette, someone said it today....another bonus....and time gained from trying to tame it in the morning...a quick mush with your hands and you are ready!💇♂️
I did the same the other day with the Prednisolone … I had no recollection of taking the meds at breakfast and searched the kitchen high and low! No sign of them! I remember taking the meds out of pill box and pressing them out of the blister packs! That’s it! I thought that PMR would let me know, but it didn’t, so I must have swallowed them in a helping of blackberries and kefir. (Fab for tummies that stuff!)
It must be the heat today, I’m in Spain, had a lovely walk and lunch, back at the apartment relaxing and it just popped into my head, the more I’m trying to think the more confused I’m getting about if I’ve taken them or not, I’m usually so good and take them at breakfast, I think I’ll take the half dose as Dorset lady suggested, how we do things on auto pilot🤷♀️😂
Not necessarily pred - it may be the illness - illness commonly affects your hair but isn't noticeable for a few months.
And now you have sorted missing your pred - go into a chemist and buy a dosette box with space for every day of the week, put your pred dose into it and keep it in your handbag so you always have it with you. You can see at a glance if you have taken today's dose or not and it stops you worrying.
I’ve got a box at home but I’m here for 3 weeks so have had to bring quite a few boxes, I have a little pill box for when I’m out but today just a blip, think I’ve gone into complete relaxed mode and getting ready to go out just forgot, I remembered all my other meds, I may have taken them, I just don’t know, hopefully not done any damage
I have a dosette box but still managed to forget my morning pills which I take with a banana! I have only realised the next morning by which time it is too late! So far my body hasn’t reacted! 🤞and I try very hard to check every day!!
Thank you, I have masses of wavy hair but always straighten it, I’ve noticed the texture has changed, but could also be age, will have to wait and see what happens, all these things going on, we could do without it all couldn’t we🙄
I had serious hair loss on about 15 mg of pred and have become totally bald in two large symmetrical areas either side of my head. Don't know what caused it.
I wear long cotton headscarves that I wrap round twice and knot. I get from a UK company called Kettlewell. Now on 3.5mg and perhaps have a little regrowth. But I now love the scarves and don't care about the hair loss. I feel I am supporting those friends who have lost hair during cancer treatments. A bright scarf and we can face the world with a smile.
Lovely to read your post this morning. I was referred to a dermatologist who diagnosed fibrosing alopecia which is increasing steadily to the extent that I now have only about a fifth of my hair left. In my case it is autoimmune (just one more to join the queue) and because the hair follicles have been damaged my hair won't grow back. However, I decided not to let it get me down, so I have bandanas for when I am at home and wear a wig for when I am going out. I am just thankful it isn't because of cancer. I will look on Kettlewell to see what they have, so thank you for that..
I sympathise as I went through a period of hair loss 6 months ago. It is easy to blame pred especially when you read the long list of contra- indicators but what Dorsetlady said is wise that it is just as likely to be the damn PMG. Anyway my hair stopped falling out but has gone a bit curly which is weird. It dose get better but I find hair loss distressing too.
Looking back to 2020 even before PMR raised its ugly head.. it came out a lot - I thought something was amiss, and then in the July 2020 - along marched the PMR. I think the acuteness and overwhelming impact that PMR has on one’s system and then put on Prednisone conspired to losing hair. It is very distressing and the more one frets the worse I found it became! It does grow again albeit slowly I found. Vitamin B9 (Folic Acid) helped me and I also take marine collagen capsules and use thickening shampoo.
I had hair loss when I was on the higher doses of pred, mine came out in chunks every time I washed it, I have quite fine hair so you could really see how much I had lossed, it also became very coarse, it's really upsetting but mine came back and much thicker than it used to be, I started taking Absolute collagen which my hairdresser recommended because it had helped with her hair loss, it's a bit expensive but at the time I was willing to try anything, it worked for me because as I said I e never had such thick hair, I now take it every other day to keep the cost down x
I was diagnosed with GCA in error and spent 15 months on Pred, starting with three months on 50mg. I lost most of my hair, in lockdown so there was no chance of hairdresser magic. I've been off Pred for just over two years now and my hair is all back as it was.
Hi, just for the future - I always write on the front of the tablet box when I started that box so that I can count back if necessary if I'm not sure I've taken the dose that day!
I’ve also been noticing recently more hair loss at the same rate as you mention (PMR joined my life in Dec 2021) not masses but more than is usual for me. It was interesting to read the item written by Dorsetlady, I’ve definitely had a few years of stress (which still isn’t over) and when I saw a rheumatologist last year she diagnosed Hyperpara Thyroidism (still waiting for referral appointment with Endocrinology for this). One or a combination of these factors could be causing it or is it an age thing!
My hair definitely been falling out more. Used to be thick and wavy, now dead straight like straw and coarse texture. Assuming its Pred + others. Have been on since Pred Jan 2023 (70mg) and am now on 20mg. I take lots of B vits... don't know if that helps but don't think it can harm. and treat with oil etc. Hoping it will return to life post Pred, if and when that ever is! Interesting what Musicality says about Omaprezole. I had a feeling that was contributing, along with everything else ( inc stress) although I'm now on Lansoprazole which is probably just as bad.
Meantime, I understand, it can be demoralising but you'll get through!
Hope you feel better and enjoy holiday and can rest.
My hair has become darker. So far no hair loss, but I do have more hair on my face and arms. If you have a cell phone, set your pill times in your Calendar (set on repeat daily) or set an alarm in your Clocks (set on repeat daily) so you don't forget. Mine are in my Clock Alarms. All the best to you.
Hi, I also experienced hair loss. I’ve been using a product that seems to be helping. Not sure if I’m allowed to advertise on this site so won’t name it. You could contact me if you want to try.
Had very fine wavy greasy hair that looked fab for one day after washing but increasngly lank the second day. On my second time on high levels of pred 15 - 30 then back down over three months, it came out very noticeably. On lower levels it stopped coming out, grew back, but was wiry, dry and candyfloss.
After around 9 months on average 4 mg it is still thick and much drier but is less coarse and is becoming softer again. It looks nice and can last a week without washing. Hope it never goes back to being so greasy.
I've studied all posts regarding hair loss over a couple of years and nearly everyone's hair grows back ok.
Thank you all for your comments and many useful recommendations, I will wait and see if hair loss continues. I am really good with my pred at home and this is the first time it’s happened, I’ve got a little pill box with me so I think I will put my morning dose in there every evening before bed, I feel ok today so yesterdays dose was either 20 or 5mg, lesson learnt!
I had a similar problem with hair loss which was more hair breakage chatter than hair loss. my hairdresser suggested that I stop combing it and brushing it so much, Take omega 3 orally and purchase products with hair thickening properties.
I was experiencing hair loss also. I am on Prednisone and Methotrexate. Because of the methotrexate I have prescription folic acid. When my hair started falling out my Dr increased my folic acid and I started taking 2 scoops of collagen in my coffee daily. Additionally I started using shampoo for hair loss. It made my hair dry but I put a few drops of oil on my hair after shampooing. Bottom line, my hair loss has stopped.
As for my medication, I use a pill box with the days of the week on each compartment. I also set a daily alarm on my cell phone.
Thank you, I will see how my hair goes and if still falling out will speak to my doctor, I seem to have a lot of changes all come together, I have very thick hair and usually only wash once a week, so will be extra careful, will def look into the collagen and folic acid, my hairs always been my best feature and I’ve always looked after it, just don’t feel like me anymore, fat face, sunken eyes, fat body and very hairy, face, arms even fingers, had to have surgery as pred pushed my eye pressure so high, have tried to keep upbeat but now noticing the hair has upset me a bit, I haven’t got the most understanding Rhuemotologist and will prob see her one more time and then change, thank you for the tips, everyone on here always so helpful
Many things cost us our crowning glory. I’ve had 2 bouts of chemo. One complete hair loss. But it grew in thick as ever. Now I have to wear a wig everyday, probably due to mega prednisone and high T4 level on Hyprothroidism (which I am on new meds for). Best to share with your Doc. I’m sorry, I know how this feels. Best of luck!
So sorry to hear this, I also have high thyroid antibodies so could even be that, I really hope you are feeling well now and on the other side of your treatments, sending you positive vibes and very best wishes
My hair thinned a few months after starting pred and the consistency changed as well (dry, like candy floss and unruly). It shed again when I started Methotrexate so rheumy upped my daily folic acid and that helped. I do note that despite the shedding episodes my hair continues to grow in length which was especially evident during COVID when I stopped going to the hairdresser for months.
I take 10,000 units of biotin daily, wash my hair infrequently (once every 7-10 days), let it dry naturally (no more blow drying and styling with roller brush), and use a wide-toothed pic to comb it out after it’s washed and dried using a detangling product. I never try to comb it out when wet. I’m also growing it out naturally and no longer Color it with permanent Color.
As far as forgetting to take my dose, it’s likely happened to all of us at one time. I’ve been on pred 5 years and forgot my morning dose just last week as I was distracted when my son and family came over. I know my PMR is still active because by supper time I was starting to feel it.
Yes. this happened to me on the higher doses of Pred. I was advised to take a folic acid tablet every day. It worked! Also as you reduce that should help. Be aware that it is not a quick fix though it took about six months for my hair to return to normal. Another benefit is that your nails will be stronger and grow fast.
I don’t know whether any one has mentioned supplements for hair loss ? When my son started losing his hair we saw a specialist dermatologist. Along with a topical steroid and minoxidil ( a stronger form of Regain) - neither of which one would take without medical referral I’m sure- he also prescribed additional zinc. Long story short, his hair came back within 3 months. Of course this was alopecia not GCA but some additional zinc might be one to check.
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