I'm only 4 weeks into my Pred journey for PMR; 3 weeks at 15mg, now 8 days at 12.5mg. So far, almost all the previous symptoms of pain, stiffness etc are being kept at bay. I have yet to see any sign of Pred-face or other weight gain - I lost 6 kilos before the PMR was diagnosed, due to general misery and lack of appetite, and so far have maintained that lower weight. My one current problem is raging insomnia. I take my uncoated Pred on waking, usually around 8.00 am, with water, followed by a milky drink at 9.00 am (I have never eaten a proper breakfast). I do not nap during the day, and tend to go to bed around mid-night, feeling generally relaxed and tired after a day of walking, gardening or whatever else I feel able to gently do. But I just cannot fall asleep - legs are restless and mind too active. I normally get up again around 2.00 am and that is the time I get the dreaded munchies !! A large glass of milk or Horlicks, and several plain biscuits or a banana later, I'm back in bed and still not asleep. Finally, I usually drop off about 4.00 am, and am thus only getting about 3-4 hours of sleep per night. Is it the Pred still in my system the thing which is keeping me awake? Would taking the Pred at bedtime or 2.00 am suit me better? May thanks for any advice.
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Yes it’s the pred. I too used to take a flask and packed lunch to bed with me for when the munchies struck! It does fade as the dose lowers.
Restless legs happen to me when I’m overtired (or pregnant 😂😂 I’m guessing this isn’t the case here!) You may need to be strict with yourself and ensure you have a legs-up-rest/snooze early afternoon. If you can’t sleep then, at least read or watch TV so your body rests. 8am to midnight is quite a long day for early PMR!
Amitryptylline is often prescribed to get through this tough period. It gives me nightmares so I avoid, but you might find it helps short term.
Uncoated pred on an empty stomach with just water may lead to stomach issues.
Plain pred taken at bedtime will likely be too early. 2am might work, try it! I take my coated pred at bedtime, releasing ?3am and it works for me. I sleep well 😴
Thank you Soraya_PMR. No, not pregnant, but I well remember the restless leg syndrome I had then !! And no, I am not continuously "on the go" from 8 to midnight - I do rest up at times, either doing emails or jigsaws or reading - I am learning to pace myself. I take Omeprazole so, so far, I have not had problems with uncoated Pred on an empty stomach. I'll ask my GP if I can have some coated Pred to try - anything to stop me having to retreat to the spare room every night to stop my husband complaining about my restlessness. TV or phones in the bedroom are an absolute No-No for him, and even a my Kindle disturbs him !!
Have a look through previous posts on insomnia- there are some already shown on screen, but plenty more if you just type “insomnia” in search box. There are lots of hints to help, but Im afraid it’s just one if those things with Pred.
When I had problems I took a Nytol tablet every 3rd or 4th night (GP’s recommendation) just to make sure it broke the cycle and I got one good night’s sleep on a fairly regularly basis. Didn’t want to take a sleeping tablet every night.
Thanks DorsetLady. I have now got the Boots equivalent of non-herbal Nytol and took just one tablet 2 nights ago and slept for 9 hours !! But I felt horrible the next morning until well after mid-day.
Thank you, a good suggestion. The packet says to take two 20 mins before bed, but I'll try just one earlier in the evening, just after supper. If it makes me sleepy as early as 9.00 pm, well then I'll just get an extra long night (I hope). I honestly didn't expect an OTC med to be so effective !!
The trouble is that during the hours before midnight, both this "owl" and her "owlish" OH have never found it easy to sleep. Contrariwise, the "lark" hours from dawn onwards have always found us both DEEPLY asleep and dependent on VERY LOUD alarm clocks to wake us up and get the new day started. Now, however, with the Pred, I am realising both that the early hours can be very pretty (at least once the clocks go forward in Spring), but that the house is pretty cold with no heating on at that time and cold yoghurt really does not appeal. (Bring on the hot chocolate and cookies and blow the blood sugar levels !!)
I had raging munchies and gave into them unfortunately. Over a stone later I am now eating sensibly. Unfortunately I still have insomnia and dint sleep more than about 4 hours a night!! You could try taking an otc sleep remedy but check with your chemist that it's ok to use with pred. If you still have problems your gp might be willing to prescribe something like amitriptyline which quite a few people on the forum use.
Ah,....sleep less nights. I cannot tolerate being awake in bed at night, so I get up. Read magazines, a good romance novel, or cozy mystery.
Warm milk with a bit of sweetener and vanilla Helps me get dozy.
As for restless legs, magnesium tablet every night keeps them away.
Nearly 6 years into my PMR journey, I have fewer sleep less nights, and most of them are caused by caffeine drinks after noon. Seems caffeine will totally wreck my sleep pattern. Sorry to say...😟
Hi cross-stitcher, in terms of pred, definitely try and get coated pred. Can you stop the ppi if you do that? No other stomach issue meds? It might not help sleep.but may help a few other issues down the line.
Then you can experiment taking pred at different times and try splitting the dose.
You go to bed late if you are currently suffering insomnia. Can you get to bed an hour or more earlier? The problem with midnight is you are already almost into the early hours of the next day. You look up and it's 1am so you either get anxious about not sleeping and/or your mind "gives up" on getting sleep soon. I have found that if I can get to sleep by 11pm and sleep until 3 or 4am I feel better than when I don't get to sleep until 4am. I suspect you have a tired blip earlier but don't go to bed as you think it's too early or that if you give in you won't sleep that night. Sleep when you can even if it's 8pm you have that tired spell. I go downhill between 3 and 5pm. I have had to move instead of rest at 4pm today as a neighbour helped me with a task. Hopefully your family will understand you are still very early in the illness and need to rest when you can.
Warm milk with a spoon of honey is supposed to calm the appetite overnight and keep you blood sugar more "normal". It also has tryptophan that is supposed to help you sleep as do bananas. Also if you are a meat eater, some turkey has tryptophan. Can you snack on those? Though I can't can't have those because they are high carbs and turkey....I don't eat meat.
I would try the magnesium supplement or the spray for your legs.
Having said all that, I had a period of about 6 weeks recently when I was the same...falling asleep at 4am everynight. Even with sleeping pills. It's hard not to get anxious about not sleeping, especially when you feel rubbish as the sleep deprivation piles up. In the end I just had a word with myself. I really stretched my brain doing reading that was complex (for me) and didn't get anxious. Result 7hrs sleep. I have had 7 nights out of 8 (I think) of good quality sleep.
I was never the world's champion sleeper, getting 4-6 hours a night. It wasn't unusual for me to go 36-48 hours without stopping at least once a month. And that was before PMR and pred entered the scene.
If you can't sleep, get out of bed. Do something slightly physical - polish a table top or give the kitchen counters a scrub. Nothing noisy (to let the household sleep). Then find your comfortable chair or stretch out on the couch, get an afghan and pillows, grab a paperback book (no screens), maybe some hot decaf tea or hot water and some fruit and cheese. (Sometimes we can't sleep because were hungry but don't know it).
One thing I tried was the chance recommendation from a friend - wear soft socks to bed that aren't too tight. My husband's tube sicks fit the bill. Too loose to cut off circulation, and cotton wasn't too hot. It stopped the restless legs and the foot/leg cramps like magic. No sleeping pills required.
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