Second time round for PMR. Had it for three years 5/6 years ago. This is third week on pred which I swore I wouldn’t take again but kind Glasgow consultant rheumatoid wouldn’t let me go without, for fear of GCA, and I am grateful to him for being a proper physician.
Feeling a lot better without pain but as I had the pain for seven months before I realised that I really should be on pred, I am now having an overcompensating bounce back and being too active in the midden of a house I live in - mostly piles and piles of paper on the deep litter system - I have hit a wall of such fatigue that my legs shake if I remain upright, mostly in the afternoons. Mornings I have the small energy I am going to have all day. Biggest problem is that I cannot sleep at night, don’t get over. 2 nights without sleeping has me shattered. Its now 04.12 and I’m still wide awake. I do all the right things to prepare for bed and have always loved my sleep. Can anyone help by telling me what to take?
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janimaths
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Oh how I sympathise with you re the sleep. I am getting desperate too, I am trying the Cleveland Clinic Go Sleep! programme, which I think is helping a bit (only 10 days into a 6 week course); I sometimes fall asleep doing the relaxation techniques. I am going to a hypnotist today to see if she can help, by giving a self hypnosis CD (she did that years ago for me about loosing weight, which i dont need to do now, thanks to PMR I lost 14 lbs in a short space of time), So will let you know if that helps).
Had same sleep problem on high doses. GP suggested I take Nytol (OTC sleeping tab) every 3rd or 4th night to ensure I got a couple of good sleeps - but not too often to become addicted.
I found it worked for me, with those good nights I managed to get through the other sleepless ones.
After a few weeks was back to normal sleep patterns luckily.
Hopefully you should also find the fatigue eases a little as well - it’s your body suddenly being very high with the increased cortisol - and as well know what goes up must come down!
However fatigue is part of the PMR so do build in rest periods.
I was prescribed 10 mgs of Amitriptolyne to be taken one hour before bedtime, this has guaranteed me at least 4 consecutive hours sleep a night. I would factor in a nap for wobbly leg time, I do. Good luck!
Can I just comment how nice it was to read 'kind rheumatologist and good physician' in same sentence. Hope your sleep settles down. The few weeks I was on 60mg were not good. Nytol did nothing for me but has worked for some. I told myself well at least you are in bed resting 😴😌
I work in batches of 4 hours sleep if I am lucky and that's will sleeping pills. If I can find comfy position I can drop off again. Amitriptyline definately helps. In the past I have used nytoland sominex. The latter helped sleep better but left me a bit hungover. If you can have milk tried warmed cup before sleep and /banana. They are carbs so might rebound. If you are a meateater build in night time snack if Turkey wrapped in lettuce like a sandwich (Don't eat meat myself).
The milk, banana and Turkey contain tryptophan and the lettuce Valerian.. .but you.might have to eat body weight for just lettuce to really help. Just suggested because better than bread. 💤💤💤💤
What dose are you on? And when do you take it? Things SHOULD improve as your body gets used to the pred again - and the dose reduces, which it should soon.
I think you may need to sit back and look at the big picture. You have to learn to pace - the pred hasn't changed the underlying disorder and that is what causes most of the fatigue.
is a post with a few links in it about fatigue and pacing.
Remember when we were small and mum used to say "she'd past tired"? You possibly need to try to rest every so often during the day and not save it all up for the night when you are so high you can't settle. Those wobbly legs in the afternoon are telling you to at least lie down for a while. I found a "zero gravity chair" helped me relax more - there are all sorts, from mega expensive to garden chairs that fold and you can put away.
One lady said that one of the Nytols helped her - but it was one specific one so it is worth trying more than one. And really - speaking to your doctor is at the top of the list. Sleep is a great healer and they do tend to be helpful. If you get prescription medication don't use it every night, use it to get a break in the pattern of not sleeping. That has a great effect.
I was so against pred and arguing with my consultant that he started me on a very low dose: 10 mg, dropping one every fortnight - to 9 - then after a fortnight to 8. He felt sorry for me I am sure because the previous weight gain 5/6 years ago SO depressed me first time round. I think I already know ( at three weeks in) that this isn’t going to work as I am getting hip pain in the third week. It’s looking as if I am going to stall sooner, rather than later. I agree with you about the resting. Last time I was greatly helped by Celtic who advocated a very very slow coming down off the pills and it worked for me when other things hadn’t.
I imagine it may have been much the same as mine! We have both been on the forums (all three of them) for a similar amount of time. The development of this
was done on another forum where Celtic and I were very active.
By the way - starting at 10mg just means you are perhaps 5mg closer to "your" dose - and it may be you can't taper far at all. You need what you need - and the early return of the hip pain suggests you have bursitis that wasn't cleared out by starting at a higher dose - so it will reappear quite soon.
Weight gain can be helped a lot by cutting carbs drastically - they are not essential and keeping to a very low level of carbs will make a difference.
From Janimaths to PMRpro. Forgot to answer your question : I take pred straight after breakfast and always around 8.30 to 9, creature of habit. Also the hip pain has disappeared three/ four days after dropping 1mg from 10 to 9. I know of old that this is a normal reaction on dropping - I had forgotten this detail. I also know that my nice rheumatologist wishes to rattle me quickly through the drops, possibly to save damage to my coronary arteries, although he’s not one to linger on explanations. (I’ve had two stents and will possibly require a new aortic valve). Whatever his idea I think I WILL require to drop more slowly - experience is everything. Thanks for giving me the slow drop table. Reading past posts it would seem that saving one third of my pred to take at 9pm is a good idea, so I will do that. Good to have a plan. I can see beautiful snow covered hills from my window. Scotland is so beautiful.
I used to have a similar view from my computer in the Vale of Strathmore - which I find throat-achingly beautiful
You are the first person I have heard of on here who has had PMR more than once. I’m horrified for you... were you back to normal in between? Did the docs say it was unusual?
There are several people on the various forums who have had PMR more than once. It is very difficult to find figures online because most doctors consider relapse/recurrence within a relatively short period after diagnosis. There seems to be a belief that if you follow a patient for up to two and a half years they will have recovered from PMR and a return of symptoms is a relapse. The truth is that for many patients PMR lasts for up to 6 years and pred is required for that long. You may manage to stop pred at a point where the underlying cause is fairly quiescent but that doesn't mean you won't slowly find the inflammation building up again. It is quite common for someone to think they have got off pred - and within a few months the familiar stiffness is back and that is the more common version. But I do know 3 or 4 who have had PMR, got off pred for 3 or 4 years or more - and then it appeared again.
However - the propensity for an autoimmune disorder to flare up seems to remain for life. Most people are lucky though.
Tough one... I have not found anything that helps. I have been taking 60, 70, 80 mg for weeks now and I sleep for only 1.5 to 2.0 hours at a time. RESIST the urge to do physical things... during the day, I write, I read, I contemplate my life. Maybe a load of laundry, My days of "doing" are gone for awhile... the hardest lesson I have EVER had to learn.
Last year I watched a TV programme where a group of people who had difficulty sleeping were asked to eat 2 kiwi fruits an hour before bedtime! Kiwis contain seratonin, apparently. The results were positive.
I have been taking one kiwi fruit at night for the past 2 or 3 months and I'm sleeping better, on the whole. Placebo effect or not, I'm glad of the extra sleep.
I saw that program recently, I think. One of the Trust Me I'm a Doctor series? Ironically I fell asleep before I heard the results. In my defence the show is on between 10-11 in the evening.
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