I have 2 queries for you wonderful people that I can’t find answers to in the FAQ’s.
First, since reducing to 6mg three weeks ago, I’ve been waking up every night for the last 2 weeks in a panic, heart pounding & in a sweat, after having the most awful nightmares, worse case scenario ones, mostly about my 3 year old autistic grandson & my daughter (his mum) who has MS & needs a mobility scooter. I lay awake for ages & when I wake in the morning I can only recall bits of the dreams thankfully.
As I’ve never had this happen before, I’m wondering if this is a reaction to my reduction of Prednisolone, or could it possibly be my adrenal glands getting a wake up call?
My 2nd query is about colouring my hair which is now completely grey as I’ve not put any colour on it since my diagnosis in September 2020.. I hate my hair now & was wondering if anyone knows if it’s safe to colour while on Prednisolone? I’ve been a bottle blonde for over 20 years & always use the same one with no problems, it’s so depressing to see grey everywhere 😢.
Thanks in advance for any advice, sorry for the long post.
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Cact
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It is probably safe enough to colour your hair - but you MAY find it is different because the quality of your hair may have changed, A few ladies in the past have found that the hair doesn't take up the dye properly - and hairdressers have said much the same.
It could well be the adrenals not keeping up with the pred reduction - it is what is caused a blunted adrenal response, they don't respond as they should. This study found it in women with a blunted adrenal response:
Thank you for the link PMRpro, I worry constantly about my daughter & grandson, if anything happens to me I don’t know how they’ll manage. I take him to nursery every day & pick him up & take him home, it’s a lot of walking for me, most of it hilly, but I manage fine. Maybe all the worry transferred over to my dreams somehow. I should mention I didn’t have any nightmares last night so hope that’s it now.
If you have had Covid that will very likely have poked something. The immune system will have been woken up again. Symptoms are a good monitor - so you can keep an eye on it yourself. Who prescribes your pred?
I had a 10 minute phone call today. Had sent an email with notes before which he thanked me for. I discussed the Cortisone dose / potential ‘Adrenal insufficiency’ right now. How I feel better in the afternoons - not so faint, with low blood pressure and racing heart. And how it’s improved somewhat since I went up to 7mg. No comment except that I should be supplementing with calcium and bone soaring drugs.
😁 I think mine was dark brown & curly, it’s been so long since I’ve seen it. I’m going to colour mine 2moro, just wanted to know if it was safe to do so.
Worth doing a Patch Test before you do it - both on the flex of your elbow & on a strand of hair to see how it takes the colour. When l still had hair worth colouring l used Daniel Field Products - l’ll see if l can find a link for you for info.
My hair is grey and can look very dull so I use a shampoo and conditioner that blondes use to stop their hair going yellow. I've used a few different brands and have found them pretty much the same. "True Blonde, Zero Yellow, Pure Silver Shampoo/Conditioner". Makes a huge difference and looks good, so I'm frequently told. And the lift in the colour certainly makes me feel better.... and I've been on Pred for five years. Whatever colour, enjoy it.😊
I was actually looking at Pure Silver today, thank you for mentioning it, I was a bit hesitant as there were a couple more to choose from, but I’ll get that one tomorrow & see how it goes. If a shampoo & conditioner can work for me I can hopefully avoid the dye 🤗
Have had no problems with colouring/dyeing hair-l’m vain. I have had nightmares/ worrying dreams over my 7 years with pmr- usually when reducing Pred and probably getting to adrenal insufficiency- felt a real feeling of doom in the early hours- occasionally about loved ones but more usually about my work that l gave up before diagnosis… it is horrid but l do think it seems to be linked to adrenals. I’m usually pretty sensible x
Omg, that must be awful for you Maisie. I’ve had no trouble sleeping in the 18 months on Prednisolone, in fact I’ve never slept better. I just seem to pass out as soon as my head hits the pillow, it’s like I’ve been sedated 😁. I’m a bit vain myself so will be colouring my hair tomorrow, might cheer me up 👍.
To be fair nightmares aren’t that often but does seem to be linked with reducing Pred and the feeling of being constantly on edge during the day- I’m not generally an anxious person but horrible at the time! Enjoy the dye- I was so happy to be at my hairdresser in summer 2020! All the best to you x
You are so lucky! My Mum had silver hair from about 40. My older sisters pestered her to dye it all the time. I take after my Dad so mine is brown with grey streaks. My sisters would be gorgeous silver but they are unnatural dark dyed colours.
I coloured it from 30 to 40 - before it was dark with silver streaks, natural ones. Then it was dark with lighter streaks as the colour never took as well on the grey. Then the roots showed within a week and I cannot abide that - so I grew it out. Shoulder length and pred wavy now thanks to Covid. A bloke at the station told me I looked like an angel - little did he know ...
That is what happened to my older sister. Really dark hair looked great with henna streaks at first. Then they went carrot coloured, then the dye would not take. She now uses permanent dye which does not suit her skin. The roots also show up dreadfully fast. Other sister is still hennaed but has to do it every 2 weeks. Not what I intend to do with my life.
😂😂 I’m absolutely sure it’s not gorgeous SeaCat, now if it was silver or white I’d probably love it, but it’s that awful grey that really ages me, & I’ve aged plenty the last 1.5 years from pred. Thanks for making me laugh😂.
I might consider it beautiful. A friend tried to restrain my older sister. He suggested that she dye her hair, if she insisted, but change it from very dark brown to the colour of a 'Fridge Door'.
That sister has nightmares but hasn't got PMR and isn't on pred. I rarely remember dreaming. One night last week she was horribly and traumatically lost in a giant fruit and veg market. Unusually I was equally lost looking for my colleagues in a post apocalyptic version of Paris with an odd similarity to the area near Harrods in London.
My younger daughter has accepted her grey - which actually is that lovely steel grey - but has just had the bottom half done purple - brilliant idea, no roots to grow out! She's always wanted purple hair - now she's making the most of her last year of being in her 30s and having a mid-life crisis (her words not mine!)
Oh yes, the old purple rinse!....Only tried 30 years ago to colour my hair, the dye on the white looked ginger when fading, so didn`t have the patience every few weeks to keep doing it....just not me...funnily enough my eyebrows are still black.
My mum went grey in early forties like me, both my sisters with brown hair only have odd grey hairs....
Some friends with dark died hair look very harsh, but we are all different....
So sorry to hear about your nightmares. I am down to 4mg now and it’s not a problem I have but we are all different. I hope you stop getting them soon. As far as the hair goes, I am also 71 and I am happy with my grey hair but I know not everyone is. I am sure there is no problem dying it when on pred. Good luck with everything!
Unfortunately I don't have nice grey hair, it is patchy and depresses me so I dye mine regularly. I do find though that it doesn't take as well as before pred and fades quite quickly. I now leave it on longer than I used to. If it makes you feel better then give it a go. I used to have someone come to my house but she has had a baby so since lockdown I have been doing it myself.
Sorry, I meant to say, it is totally understandable re your worrying, we worry about our children at the best of times but you have so much more to think about, it must be awful and I really feel for you. Does your daughter get any outside help?
No outside help yet, she can get around the house all right, but needs the mobility scooter when going out anywhere. I help her as much as I can, just worry if the time comes when I can’t.
Yes! Dreadful nightmares most nights, tbh. Remember all the details in the morning, too. Thought it was amitryptylline muscle relaxant but had to give that up & a month later still have the nightmares. For me it seems to be caused by pain..guess if in pain your sleep is lighter, & then nightmares occur? On rare nights I have no pain…no nightmares. But yours sound like they are caused by worry, possibly? Difficult situation for you, but will hopefully resolve…my friend has MS & wheelchair bound & brought up two children, sadly her parents passed away youngish. Help is there, too, reach out to the MS community & charities, if you need it! Take care, keep calm, if possible, hugs, S xx
Thank you Pixix, I have no pain so think it might be withdrawal symptoms or the adrenal glands waking up. No nightmare last night so hopefully it’s passed. I’m trying not to worry, it’s not easy though 😊
It never occurred to me not to continue dyeing my hair, OK it’s a bit different in texture after 5 years of Prednisone but I’m far too vain to leave it, as for nightmares I had those for a while but only occasionally now, I put them down to just another prednisone side effect
Im sorry to hear this - it’s awful. I have had the same over the last few weeks - sweating, shaky heart racing and not bad dreams but VERY anxious and my dreams felt like delirium - but upped my Pred from 6.5 to 7 and it seems to improved somewhat. I’ve also just had Covid. Also have really low blood pressure, shaky and heart races all morning. I see to improve in the afternoon.
I also have hypothyroidism (possibly Hashimoto’s) and Mast Cell Activation Syndrome - so Histamine Intolerance also makes me dizzy and heart races!
Just wanted to mention the Wahls protocol for MS. Terry Wahls is an MD who put her MS into remission. A large part of the protocol is diet related. The MS foundation in America is now funding research for it because it’s been so effective. Might be worth looking at.
Interestingly I stopped dreaming (both good and bad dreams) whilst on Pred until I got to lower doses. I hadn’t even realized I stopped until I started dreaming again. I also continued dying my hair whilst on Pred (for 7+ yrs). With pandemic I stopped and decided to let it go gray. Turns out my hair is much healthier for it! I also quite like the gray (and I save money!). Mind, the healthier hair could als be because I came off Pred (on Actemra) at least for a while. Back on 1mg at present.
After breast cancer treatment I was told by Dana Faber Cancer Institute that it would be much better health wise to stop putting chemicals on my head. I let my hair go gray and I’m loving it. Why not try some white blond face framing streaks . They would look great with gray hair and you can skip all those chemicals on your head.
I remember my mother complaining about the state of her hair - she had had regular perms for years though never coloured it. She was as white as I am. I suggested she stopped perming - and she was amazed to find the difference, it became softer and thicker once the cauliflower set was gone.
Thank you Blackcatlover, I was actually thinking along those lines, getting hi lights or silver streaks would be a safer option as they’re done with foil so very little chemicals on the scalp. Worth considering 😊
No wonder you are having anxious dreams, you have so much on your plate and quite rightly feel indispensable. Is there no one who can help take some of this, albeit loving, burden? Can your GP perhaps suggest some help for you as a family? It may even help you to explore solutions with a psychotherapist? Are you claiming all the carers’ benefits that you are entitled to, look into it?Stress appears in so many of our stories in the lead up to diagnosis. It is a clear sign that it has all got too much. Tapering and Pred can make you feel anxious, but you are supplying the narrative in my view. I hope you are not going too fast.
On a lighter note, my lovely hairdresser has looked after my hair since diagnosis 6 years ago. This includes colour - a mixture of low lights that blends the grey and mixes it with shades of blonde. It is also gentler than a whole head colour. She gave me a clever layer cut when my hair got very thin and showed me what to do with my new Pred induced curls. I missed appointments during lockdown and found silver shampoos made for a prettier colour. The dye had no adverse effect. It is good for the morale as well.
Welcome to the forum. Letting off steam here will help as will all the knowledge, wisdom and experience we all benefit from.
Thank you for your comments Jane, what worries me is as I get lower on my steroids I’m expecting to get pains & I’ll be unable to take my grandson to & from the nursery. She can’t do it on her own being on a mobility scooter, & being Autistic his behaviour can be unpredictable at times. I know my husband will step in if I can’t so really I shouldn’t be worrying so much. I’ve made my mind up to stop that now, & no nightmare last night😊. It’s a case of mind over matter then.I might try the silver shampoo you mentioned first & see if it makes any difference to my hair before I go down the chemical route. Worth a try, thanks for the tip😊.
If you taper gently, cut uncoated tablets and go down by half a mg with 3-4 weeks between your drops, when you get below 10 mgs. You shouldn’t get much pain and stiffness if you do it carefully. I managed to do the nursery run for my grandson. His chatting kept me going all the way home, ( walking, pushing these great heavy prams they have these days)The family have emigrated to Australia. I miss it so much, it shaped my day. It’s hard to motivate myself to go out now. My grandson had his quirks but I got him, and he got me. I know it’s hard though. Your family is very fortunate to have you. I am glad that you are feeling less overwhelmed, it does help to share. We rant here a lot!
Thanks Jane, I had a good long chat with myself about my anxiety after reading the replies to my last post 5 days ago. It appears to have worked as I’ve had no dreams good or bad since🤞.I’ve been doing the slow taper of .5mg every 4 weeks since June when I was on 10mg, then in July I had major bowel surgery (on 9.5) & that was doubled to 19mg for ten days. Tested positive for covid on January 1st for 10 days so stayed on 6.5 for 7 weeks. Starting on 5.5 tomorrow so fingers crossed for no complications. I’ve been very lucky so far, only one flair a year ago due to my rheumatologist making me reduce at record speed & I didn’t know any different. I do now though since I found this brilliant site & learned so much.
Thank you all so much for being there for everyone 😘.
If you get lower on your steroids and pain returns - you are on too low a dose of pred. You are NOT heading relentlessly for zero pred. You are looking for the LOWEST EFFECTIVE DOSE - the lowest dose that gives the same result as the starting dose did. It is not reducing to get off the pred, it is a process called titration to identify the right dose for YOU, not me or your neighbour or anyone else. Everyone is different in all sorts of ways: disease activity, activity, needs, fitness (although being very fit previously does not have a direct link with the dose you need) and so on and so there is no fixed dose to end up on.
Thanks PMRpro, this time last year I was on 5mg following my rheumie’s instructions, no problems until April when I went to 4mg, big flair & back on 10mg & reducing slowly since then by .05mg. A couple of glitches along the way as explained in my reply to SheffieldJane above, but back on track & reducing slowly now.😊
Can’t contribute much about the nightmares and adrenal function, but others have.
As far as colouring your hair, I have done so (with permanent colour), while having PMR and being on pred. I don’t colour it as often now (twice a year vs. every 3 months or so in the past), because it has thinned and changed in texture. Unfortunately without the blonde colouring I’m mouse brown with grey, not the lovely pure silver/white.
In January I started Methotrexate which has affected my hair in that it has thinned a bit more. I want to be careful with what is left so I may switch to a rinse if possible as the bleach and permanent colour is hard on the hair. I get the product online and my daughter applies it, much less expensive than going to a salon.
Good luck and I hope you get relief from the nightmares, and a wonderful result from your hair colouring. It feels so good (for me), after I get my hair coloured!
I wish mine was a lovely silver/white, I’d be very happy with that, but it’s that awful battleship grey & I hate it with a passion 😊. I might go for silver or white hilights after I’ve tried the silver shampoo to see if it makes any difference. Nightmares have stopped for now.
Hi Cact, I get nightmares and disturbed sleep and I am on 5mg once oer day. One of the side effects I believe. Don't see a problem with hair colouring though I have mine done every 6 to 8 weeks
I’ve safely coloured my hair whilst on Prednisolone 20 mg now reducing down to 4 mg . I’ve not had any trouble I’m grey and same age as you and going blonde again with no problems . Good luck with you hair colour x
Thank you RoRee, it’s good to know you’ve had no adverse effects from the dye. I’m going to try the silver shampoo & conditioner first to see how it turns out, if I’m not impressed I’ll definitely go blonde again. 👩
I too have weird dreams since on lower doses of pred. Ironically they always involve someone in my past who is already dead such as my parents, aunts, etc. it’s pretty creepy. Oh, the joys of pred!I started to dye my hair again after my temporal biopsy was completely healed. No adverse effects. Although my hair is now straw but that has to do with the pred not dye
Thanks for your comment. My nightmares actually stopped after reading replies to my post 5 days ago thank goodness. Maybe because I gave myself a telling off for worrying about things that haven’t even happened yet. 😊.You’re right, the pred does play havoc with our hair, mine is much thinner & feels rough, that’s why I was asking about colouring my hair which is now grey. I was afraid it would fall out & I’d be a baldie 😂. I’m encouraged by all the people who have coloured theirs with no problems, I’ll pluck up the courage one of these days 😊
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Saves a fortune too!
(her words not mine!)
Medications that reduce an overactive bladder
Can’t reduce below 5mg
DSNS - almost down from 6mg
reducing Prednisolone 
