Hello Friends! Diagnosed in August 2017 with PMR ... currently weaning down from 20mg to 17.5 / I wake up every day at 430 am and cannot get back to sleep! Any suggestions? I read all your posts daily and am soo thankful for all your advice and stories ... Thsnk you Thank you esp to Dorset Lady & PMR Pro - you are my heroes!! Am I waking up because of the pain in my arms or because there's not enough pred in my body at that hour? Tired wired all day as a result . If I take the pred at 430 will it keep me awake or do the opposite? I've been trying to take Melatonin at night but it's not working either. Help - in dire need of sleep!
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Kaerick
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It's a bit of a "try and see what happens" sometimes. It could just be your body getting acclimatised to Pred, and a few more weeks and you may be okay.
I found sleeping difficult in first few weeks, but my witching hour was nearer 2.30 am!!! So, after discussing with the GP I took a Ntyol tablet every 4th or 5th night so I could get a good night's sleep, but not too often to get addicted to them.
There could be a few reasons why you are waking, but as you're awake at 4.30 then it might be a good idea to take the Pred then. Some do that with a spoon of yogurt or something and then manage to fall back to sleep for an hour or two whilst it gets to work.
If it's the pain that wakes you, then maybe your Pred doesn't last the full 24hours, so a suggestion may be to take a small amount before bed to get you through that scenario, (say 1/3rd nightime, 2/3rds morning) but personally I would be inclined not too, as it may make your sleep even more erratic. Although it does work for many.
If it's just come on since your current tapering, then maybe 17.5mg is not quite enough, and you need to go back to 20mg and then maybe only reduce by 1mg a time. Are you getting any other symptoms that might indicate 17.5mg is not enough?
Sorry not to give you a definitive answer, but with PMR/Pred there usually isn't!
Thank you for the advice - I was waking up around 330 - 4 when I was taking the 20mg too? Maybe just something I have to deal with which is frustrating - but I'll try taking 1tab at night to seeing that makes a difference otherwise sleeping aids . Thank you!!
I'm afraid that you probably have to accept the wakefulness - and take any opportunity to rest that you can. It is a side effect of pred for some people. It will improve as you reduce the dose and get used to being on pred.
If you take the pred at 4.30am it won't be keeping you awake for a couple of hours - it can't do anything until it is in the blood stream.
Some people have made friends with the radio, others get up and find a quiet place to sit and read or just relax. Everyone has their own way of coping. Personally I've never found melatonin helped me - not that it is available in the UK.
I used to have this problem ( it's the opposite now, can't stay awake). Eventually I was given a prescription for 10 mgs of Amitriptylin, to be taken 1 hour before bedtime, it really helped. It also has pain relieving properties. Promise yourself a nap in the daytime if at all possible, it helps you to have a bit of an evening. I am not sure if I would be reducing at all if I still had arm pain. Sounds like the inflammation is still pretty active. I guess you know about reducing really slowly in tiny decrements. Blow what some doctors say, it's the only way. Good luck!
I also wake up early with lots of pains and stiffness.
Take me pred then. When I can coach myself out then sometimes Walk around to wate of stiffness.
Then back to bed. 👍👍
But what I have emitted to say yet is I take 0ne 10mg tab. Of Amitriptyline. It is not a sleeping tab it
Is a relaxing drug. But do take it around tea time as it is slow to kick in. But it does take a little while to get use to. Also it cured my over activity bladder that's why it was first prescribed for me.
Yes, I also found Amitriptyline helped me after 2 years of sleep problems from the Pred. If I forget to take it one night then I am awake most of the night. My system does not seem to have got used to this side effect, so I continue to take this drug.
I am up as well. 3:30 am is my internal alarm! I split my dos but that doesn't help. 2 Advil PM 's get me to sleep. I think my body needs to move away the morning stiffness before 5:00 am Pred. My Rheumotologist says side effects lessen with dose at 5. I communicate with PMR buddies from my bed on my I pad, journal and read. I am resting after lunch for about an hour.
Our heroes suggested getting up after the rest so I take my dog around the block. The movement helps but I am in bed early. This wreaks havoc on a social life! I lose my "funny" after 8:00 pm and prefer brunch and lunch dates to dinner! PMR care takes precedence over everything.
Tapering has not improved sleep. Learn to love the peace and quiet of daybreak, I take early exercise classes in preparation for afternoon crash. Embrace side effects!
This isn't so much advice, but rather you all reminded me of a funny story about accepting the side effects, from when I first started in the prednisone. I had PMR symptoms that got quite severe, I could barely walk, for 3 months before I was finally prescribed prednisone in early November. I was soooo happy for the pain relief...within an hour of my first dose I was a new person. About a month later, I went to a Christmas party at a friend's house. I left a bit early as it was snowing and dark here in Colorado and I had a long drive home. When I got to my car I decided to get all the snow off of my friend, Nancy's car, as well as my own, because she wasn't feeling so well. But I couldn't tell which car was hers with the snow and the dark so...I just started cleaning off a couple more cars. By the time Nancy came out I had cleaned off all the cars for everyone in the party and all the neighbors as well...pretty much the entire block. Nancy came out and asked me why I had done that with the PMR and all and I just said "Well, I got started and I just sort of couldn't stop. She started laughing and she told me it was the prednisone. Her husband had been on it and apparently when one first starts at the higher doses it can give some of us a fair amount of nervous energy. She told me to enjoy it while it lasted because it would wear off...and it did. Perhaps, too, I was just so happy to be able to move again that I had to keep moving. In any case, I wish you peaceful sleep soon!
I do sympathise. Disturbed sleep is horrid! At higher doses I suffered with restless legs during the night which was probably the Duracell bunny response to the steroid, it was much I proved by splitting the daily dose and taking a third of it at bedtime and the rest in the morning. My GP kindly prescribed enteric coated prednisolone which releases more slowly. I also took a magnesium malate supplement for a while.
I hope you get relief from the early starts soon, best wishes, Chrissie.
Thank you so much Christie - I guess it's a day by day situation .... going to try some different things - I'm tired wired all the time and still trying to work 9-10 hr days - cat naps at lunch time ! Have a great day 😎
It was suggested I reply because I have experience with melatonin.
Do not know anything about the ailments you have.
I have asthma, bronchitis, sinusitis and heart issues. Also anxiety disorders.
When I'm very uncomfortable I can't sleep. If I wake up choking I can become afraid to go to sleep.
I think cardizem helped me sleep but t may have aggravated my respiratory disease so I was told to stop at least for now by my cardiologist.
I have found melatonin really works especially now that I have stopped caffeine for over 6 months. The more you take it I found I build up resistance. Under 1mg effective.
If it's not working, perhaps try tart cherries or tart cherries juice (sadly also high in sugar). It has also worked for me.
Then there is magnesium, calcium, hot bath, some say oatmeal or warm milk.
Thank you for your reply .... continuing to walk or run as my body allows - to tired it out - maybe I'll try a little oatmeal around bedtime too - good idea - I guess I have to experiment with a few things .... I'm really cranky with no sleep! However tonight is a new night - fingers crossed!! Night night
I had that same problem a month ago and now I am totally fine. I took some melatonin 10mg but it didn't work for me. My friend who also had problems sleeping suggested that I take magnesium supplements. I did and it worked for me. It is not a sleeping pill, it just makes you relax and gives you a really good rest. My friend combines the magnesium and melatonin and it works for her, for me I just take the magnesium supplement and it works for me. Also, if you are taking a lot caffeine daily maybe you can lower the dose and for sure it will help with your sleep.
Thank you for your post - I'll definitely try the magnesium supplements - at this point - I'll try anything to sleep - trying to stay away from the Ambien or related if I can 😳 thanks again!! Night night
I've never been the best sleeper but since pred was upped to 60 from 15 3 weeks ago its been worse. Have actually had a few nights with no sleep at all.😌 then short nap during day. Definitely not ideal. Last night I took a Nytol (herbal one) at 10 pm. At 2am I felt sleepy yaay! and fell asleep shortly afterwards and slept for almost 7 hours. Wonderful to wake up feeling refreshed. Dorset Lady mentioned then in another post and that she took them occasionally. Couldn't come more highly recommended than that #hero 😆
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