Hello folks. I'm reducing my pred and after making myself quite ill last spring by reducing too fast, I'm trying to be a bit more sensible. I'm currently dropping from 7mg to 6mg by a very slow taper. The main side effect I've had on pred is insomnia and as someone who on a bad night would have slept for 8 hours (on a good night 10 was quite normal), I'm really struggling with this. I was wondering if people's experience is that once you get off pred, the insomnia resolves quickly or does it take a while for everything to settle down. The insomnia is making me very anxious which of course makes things worse. Any help or advice would be really welcome.
Pred and insomnia: Hello folks. I'm reducing my... - PMRGCAuk
Pred and insomnia
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Norma1610
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I hope it resolves. I am similarly effected. I sleep for 90 minutes ( body’s choice) after lunch. This helps my well-being and doesn’t impact on my night sleep. Audio books help me to trick myself into falling asleep - insomnia can become a habit. It feels less desperate knowing that I can catch up the next day. I was prescribed Amitriptyline 10 mgs to take one hour before bedtime, that helped for a while. The stage of tapering that you are at introduces the Adrenals struggle to work again. This can produce a lot of symptoms, including sleep disturbance.
Thank you for getting back to me so quickly. I didn't know that persuading my adrenals to work again can cause sleep disturbance. In spite of my low dose of pred, I don't really have much of a problem with the pmr now, I'm a bit achy sometimes but nothing much. I can't wait to get off the pred but after my experience of adrenal insufficiency last spring, I'm being very careful! Do you think it's worth speaking to my GP for a bit of short term help to get through this?
I think this bit just has to be got through. You can have a Synacthen test when you are down to about 3 mgs to see if they can work properly. I would find myself suddenly wide awake at 3 am raring to get on with the day. Then I would be suddenly swooningly tired at some inappropriate time in the day. My first Synacthen test failed at 5 mgs but was completely in the normal range at 3 mgs. I have to see the Endocrinologist when I get below 5 mgs again, having received a GCA diagnosis in the meantime and raised my Pred dose to 40 mgs. At 8 mgs currently.
As you reduce your doseage of steroids it is quite common to also get over your insomnia . in fact , at lower doses when the adrenal system is still trying to take back doing the functions that the steroids did many people find they sleep too much for a while. After coming off steroids many people find that they can get their regular sleeping pattern back within a few months , sometimes less , as long as there is nothing else effecting your ability to sleep too.
If the insomnia is bad you can get medical help to reduce it . These are often things like Amitriptyline , sometimes antidepressants , but don't be scared of that as these drugs are commonly used now for the treatment of a variety of conditions not just for Depression because other symptoms were seen to improve with them .
Finding a drug is very trial and error , what works for one person wont always work for another , Amitriptyline , for example, made my insomnia worse , but that was because of other health conditions that I have.
My sleep was helped , in part by using an antihistamine , which has also been helpful in the control of some of my neuro pain.
If you do decide to use a drug to help you sleep build up from a lower dose than the one the GP chooses as your standard doseage. This helps reduce side effects , but you can sometimes find that you need less the the average dose prescribed. If it starts to work less then you can ask about an increase. If you take drugs to help you sleep it is also beneficial to take the odd days off from using them to see if your sleep pattern has rectified itself , but it also helps to prevent you becoming resistant to the drugs affects and needing larger and larger doses.
The best thing you can do to help insomnia , and reduce the added pain lack of rest causes, is to create a good sleeping enviroment and bedtime routine.
Some people find a warm milk or oat based drink an hour before bed helps, carbohydrate can help stimulate the production of natural serotonin which aids sleep.
Make sure you r bed is comfy , a good mattress, mattress topper or pillow support can work wonders.
Make sure the temperature of your room is perfect for Goldilocks , not too cool, not too warm.
Avoid strong smells like scented candles or perfumes in the late evening , as, believe it or not, they are proven to increase your heart rate and stimulate wakefulness if they are still strong to smell in a room an hour after you first smell them.
A lavender, citronella or chamomile scent whilst preparing to go to bed, downstairs or in the bathroom, for 15-30 mins, on the other hand has been proved to be relaxing .
Don't have bright lights in the room or through doors and windows distracting you.
Turn off that TV, computer or mobile phone and stop any bedtime reading an hour before sleep, An active brain is not a relaxed one.
Music or sounds can be good without light as long as they are ones that you feel you are relaxing to. Audio books can be good for some , but if you find you are still avidly concentrating on listening half an hour after you should be dropping off that isn't a sleep aid for you.
Make sure you take any medications or food at least two hours before you want to go to sleep , unless you are on a programme that means it is needed while in your sleep pattern. Sometimes taking medication or food can stimulate the body in ways that reduce sleepiness.
Do whatever slow activity relaxes your body in the evening time before you head to bed , like a warm bath or shower, meditation, reading , watch a film. Get into the routine of allowing yourself to relax. put on lotions or creams with some level of soft massaging not crazy rubbing as this will help soothe your aches and prepare the body for sleep.
Get whatever you really needed to prepared or done if you are still at work or a busy bee, but give yourself a no excuses cut off time every day. Begin the habit of telling your mind off if you start trying to organise in your head what you must do the following day, people like computers need to switch off.
Tell friends and family a cut off time for sociable calls and chatty texts, only emergency calls past....
Don't be tempted to answer the phone, especially from some random number just because it rings.
That chat may be fun but it's often stimulating and can break your relaxation routine apart.
Do some gentle stretches before getting into bed or on your bed and then after you have put down your book and put off the light do some simple deep breathing and body relaxing techniques so that you body and mind are prepared for going to sleep.
If you aren't dropping off , keep warm but go and have a little stretch out of bath or a cup of water or caffeine free tea , do some more breathing exercises etc. for a short time, then get back into bed . Insomnia will only get worse if you lie there staring at the ceiling in the dark and worrying because you can't get to sleep.
If other peoples activity noises in other rooms disturb you , tell them kindly and work out a way they can help you and still enjoy themselves , but just a bit quieter. if you have a partner whom snores or their sleep habits ruin your sleep talk to them about getting help to deal with their sleep issues too explaining how it effects you. Unfortunately, it is sometimes necessary for long term partners to choose to sleep separately if their sleep patterns disturb each other.
If you feel tired in the day let yourself have a nap , just keep it at an hour or less. Studies show depriving yourself of a daytime siesta can often make it harder to sleep at night because your body and brain have become overtired. A short nap is a guilt free treat.
A healthy diet rich in vitamins and minerals and adequate fluid intake in the day can also reduce insomnia.
Thank you for all your advice. I'm having a weekend away at the minute but will read and thoroughly digest your message when I get home. I wondered about the anti histamines you mentioned. I take those (Boots Sleepeze) and find they do help but it says they are for short term use only. I wondered if you took them on a long term basis.
I do take them on a long term basis , as prescribed , as they are being taken to reduce the effect of histamines on the symptoms of my other conditions , not just for insomnia. I do know of a number of people whom take antihistamines as an option for insomnia alone , as prescribed by the GP, and they have had positive results with them.
I did try Sleepeze type medications and more herbal OTT sleep meds years ago but they did nothing for me, I think medical insomnia instead of temporary sleeplessness needs a little bit more specific consideration in relation to the drugs you need to take.
Excellent advice, which I follow to help my insomnia. Amitriptyline did not work for me at all, I didn't sleep but feel like a zombie the following morning. What helps me is taking OTC Nytol, Sleepeze or similar sleep inducing medication every 3rd or 4th night to help me have 1 or 2 unbroken nights sleep a week. On the nights I don't take them it takes me a while to get to sleep and I awake at least 3 - 4 times a night. Good luck, I hope you find something that helps you soon.
DorsetLadyPMRGCAuk volunteer
Hi couple of posts, one on sleep and there are plenty of related posts -
healthunlocked.com/pmrgcauk...
And one on adrenals -
healthunlocked.com/pmrgcauk...
I found my insomnia resolved even when still on Pred - fortunately, but yes it’s should get better as time goes by.
Than you for your help. Do you think it's necessary to have the blood test that has been mentioned? When I was reducing before, I dropped from 6.5mg to 5mg in a matter of days because I was feeling so well. Then suddenly I wasn't feeling so good - too much of a drop too quickly for me. I won't make that mistake again! This time, so far so good 🙂
Test - not until you get a bit lower - and yes dropping too quickly particularly under the disease you’re on isn’t good.
Slower tapers help both the PMR (as doses gets lower much more of a fine line between what is enough and what isn’t!) and the adrenals - they need nudging back into functioning- and very often that just takes time and patience
I too suffer from a very poor sleep pattern and regularly have nights when I'm literally awake the whole night.You've been given some excellent advice and recommendations to try and some of those have definitely helped me too.
Not everything will work for you though, and what does seem to help won't necessarily work every time you implement it. It's important to try not to stress about it if you can.
I'm fortunate in that I'm retired and so on those nights when I'm awake, I just accept it's going to be 'one of those nights'!
I know I don't have to be at work the next day, so I know I can rest up, and that in itself takes a lot of the stress out of the situation. I lay in bed, sometimes just looking up at the night sky and I'm still resting if not quite asleep.
You may not be in a position to do that yourself so your circumstances will probably demand a different course of action to my own and others.
Don't give up hope though...there is still much you can do to improve your sleep situation and as I said earlier, you've been given some good potential remedies. Good luck.
Thank you. It somehow makes me feel better to know it's not just me.
PMRproAmbassador
Trouble is - there aren't THAT many on the forum who are totally off pred. But pleanty who struggle to sleep well.
I can't help much - I sleep like a log most of the time now even though I am well above 10mg but I do notice a difference if I forget to take the magnesium supplement I use just before bed. I do have a the odd night where I wake and that is it for the next couple of hours - now I just accept it.
It is worth asking the doctor if they can help - but some people have found the Nytols help though not all and it varies which, trial and error to identify the one that works for you or, as you mentioned, anti-histamines. Often you just need to use them to break the pattern and once you have done that you can work on sleeping better.
Interesting to read these posts...for the first time in 49 years I have known my husband, he is ill....he hasn't slept more than an hour at night for the last 2 weeks, he has stressful feel ings across his chest and down both arms....he just cannot switch off at all!... and no appetite......he is a very relaxed person normally so this has shocked him..I got him to the doctors on wednesday last week, blood tests taken, awaiting results. He has tried Nytol....no affect....what did surprise me, the doctor didn't even take his blood pressue!She looked for his notes.....there weren't any!..only that he had the jabs.....
Hoping there is something they prescribe so he can sleep....
Doctor asked about me.....is he worried...no, she has been ill for years, and is no worse!...
What is it with them - with arm pain, whatever the cause, a BP would be a basic piece of info. But they think they are above such menial tasks .... Have you got a BP cuff? Would be a more accurate reading anyway.
Yes, I took it...best of three was 175/80.......
If they ring with "normal" results I will ask for him to be referred...but who to?....he has now been lying down for an hour....just cannot switch off to sleep!...so got up again....he gets an anxious type feeling when he's lying down...when asked why...because I know I'm not going to be able to sleep......this is so not him!......
There is always A&E/999 - don't rule it out.
Is your hubby eating and drinking okay, Longtimer? He must be feeling pretty bad with so little sleep. I agree with PMRpro, call 999 if you feel anything’s changing/ he gets more unwell.
Hope he’s better soon xx
No, not eating.....no appetite......normally eats very well....it all came on so quick that's what seems odd...but I want answers...I know he feels very ill because he was happy to go straight to the doctor......uThank you.....
I'd be on 999 ...
Me too
He has now had scrambled egg on toast, and now lying down in the lounge where I am now, so will keep an eye on him, and will also know if he drops off for a while, but if surgery don't ring tomorrow I will ring them late afternoon.....and if no joy 111.....or 999 if things don't improve.......Was going to lower pred this week after several months on 7 mg....not now!
Glad he’s had something to eat now Longtimer 😊x
Unless there’s a sudden improvement- maybe call the surgery in the morning rather than the afternoon? Hugs xx
And 999 is 24/7 ...
Surgery rang, all bloods normal, obviously wouldn't tell me so he just said thank you....then said can you ask them what tests where done.....why didn't he!....have been online to see if I could ask....many staff off....no answers online today....only phone calls....so will ring or go online tomorrow!.......I presume it was fbc.....
Hi Longtimer 😊Glad bloods are normal. How is your husband today? Did he sleep last night and how’s his appetite?
Also….how are you? x
Thank you for asking about me....today I am fatigued more than usual.....I know this is stressing me as I am watching him all the time...which probably sounds daft....but I am alone in the lounge right now for some quiet, and maybe a doze.....I am not sleeping too good because of hearing him up and down!...doing some deep breathing.....OH slept for 3 hours last night, most he's had for a long while.......he also had a 1hour deep sleep in the lounge early evening. What I find puzzling is as soon as he wakes, he has this feeling across his chest and down both arms....so he then has to walk about a bit.....
I thought maybe it was a thyroid problem, but obviously not if test was normal.....
Thanks again for asking x
"which probably sounds daft" - no it doesn't. it is our spidey sense. The kids being grown up doesn't stop it ...
OH's bloods were usually normal (for him) but he was blatantly NOT normal ...
Exactly....rather frustrating because unlike me with years of dealing with medical problems and test results, he just said thank you...then said ask them what tests they did....as if I could just ring her back and get a quick reply!!...I will try again tomorrow, but as you have said, if I w as concerned I would ring emergency services......
How are you dealing with lowering now?.....
Down to 12mg, 10mg was too far so I'll give it a month or two and try again. 11mg might well be enough but I'm out of 1mg tablets.
Why on earth did he not say to the receptionist could she speak to you? Men!!!!
I know, I gave him one of my looks....pathetic....I have always dealt with everything about my health myself, he just takes me to appointments.....he's going to have to learn fast!....Such a shame they won't talk to me about him....but I get it why not....
You are doing well....I pray you do not get adrenal fatigue!....often wonder why some people sail through and others like me have this horrible battle....but it can't be hurried...I'll get there.....
Not in the adrenal danger zone yet - below 10 maybe ... But I have never got below 10mg before without a major struggle!
Well hopefully now under different circumstances with less stress you will.
Hope springs eternal ...
Fingers crossed for you....👍
Sorry , I only just read what is happening with you.
Have you been taking his BP and the heart Rate regularly through the day since you initial readings?
If not , may I suggest you do and start jotting them down , first one before he gets up off the bed , and a second after he has been to the bathroom and got ready starts a good baseline to see if it is affected by activity.
If the other blood tests came back normal and his symptoms are still there don't delay , do call 111, it is not just for the worst emergencies but can get you local support and tests quicker from the Department you may need , as I would think he may need an ECG and some other tests done by Cardiology.
My friend called early one morning last week with a recurrence of Cellulitis , within two hours she'd spoken to a doctor whom had arranged blood tests and a prescription for someone to collect at her local chemist. It sounds like you may need to sit with him during the calls though with a pad and pen , to give him a poke and reminder of what to ask.
His BP and heart rate results as well as his list of physical symptoms will be helpful to them to make their decisions.
Good luck and try and get as much rest as you can yourself , Bee x
That's fine, no need to apologise.....
My O H says the feeling is a heaviness top of chest and arms.....not pain....apparently this all could be stress, but he says nothing to stress about only that he can't sleep!!
Anyway, last night he got no sleep whatsoever...I rang surgery first thing, got him an appointment late afternoon today. He saw a nice doctor, he explained quite a few things, but admitted little is really known about sleep....he prescribed zoplicone....just one week's worth.....also said buy vitamin D.....this gradually started slowly in December, and got a lot worse..., and doctor said he thinks like lots of people...no sunlight many get low and can't sleep....hopefully he is right and we can resolve this.....no other tests as yet, so if things don't improve we will press for them.... ...so fingers crossed...
Thank you...
Good Job, I hope it helps.
Of course , it is often hard to tell what came first with these things , the sleeplessness or the symptom , or which one caused the other.
Could I suggest that you still do the BP and heart checks periodically through the day and mark down the results , no matter how resistant your husband shaped patient might be, also note if his symptoms feel worse at any particular time of day , or after certain activities, including things like a nap or eating.
If the high BP persists , even if other pains go , it will still need further investigation, it could be the first symptom of something else which could be treated really quickly if nipped in the bud.
Remind your OH that there is a difference between Anxiety and Stress.
Stress is not always a bad thing , in fact it is more often too much of a good thing.
Stress is just any activity , either positive or negative , that has put the body or mind under more stress than it is able to cope with at that time.
This activity doesn't need to have been done on the same time of day you have the problem either.
Christmas is a big stressor, doing a bit of gardening after being inactive for some time, even going out for a few fun day trips can all be a stressor. If he understands what Stress actually is it might help him work out if there is an activity based cause for his new symptoms. Good luck with it , and get rest yourself , this is also a new Stress for you and you need to take extra care of yourself to make sure it doesn't cause a flare for your symptoms too. Hugs, Bee x
Thank you for that, good advice...for once OH is asking me and doing as he's told!....he is not used to fee!ing ill...how lucky is he.......all along it has been the heavy feeling that worried him, not just the sleep but seeing the doctor, and my son coming round to see him yesterday it didn't happen....mind and body!!Because of not sleeping night before he had 3 hours deep sleep on settee last night...then light sleep last night
Can't get Zoplicone till today, but doctor said take only one, then wait a couple of days till another one....
Watch this space...we need sunlight! ...
Thanks again xx
I have insomnia regularly - never know when it is going to strike. When it does, most of the time, I do not get to sleep until dawn. I am tired but just cannot sleep. This all started from the time I started a Pred. If I have this on one night, I usually can sleep on the next.
I have been reluctant to take any additional medication for sleep as I understand the ‘sleepiness’ caused by these, can go in into the next day.
I do not feel sleepy in afternoons so cannot take a nap. I just get used to it and hope I will sleep when I go to bed, taking all the right measures as possible to get a good night’s sleep.
Morning Norma1610, hopefully you are not awake yet. One of the things that I realised many years ago, when my OA was being really grumpy and I was working full time, was that there was no point getting stressed because I couldn't get comfortable and therefore sleep in bed. Once I accepted that, I would get up, have a brew, cup of hot chocolate, horlicks or something and then read or watch TV/doze/sleep in a chair/settee until I needed to change position again then possibly back to bed. The important part of this is not the cause or why you are awake or what you do when awake but the acceptance that it is going to/might happen because its part of your normal life at this time, and therefore not getting stressed about it.
That is the exact attitude to have , although , unless you have the most comfortable reclining chair or good long sofa , spending the night on them isn't the most ideal thing to do to keep control of your joint pain and stiffness.
It's quite good for getting relaxed and when you feel you are getting that sleepy feeling getting back into bed.
A very comfortable reclining chair.
Hi there I too suffer from sleeplessness big time!! If i get a mere 3 hours sleep i am lucky! I am now down to 10mgs of steroid from 20mgs- I had to go back up due to a bad chest infection- then had to start the taper all over again I also have numerous other issues from steroids- moon face, red blotches, hair loss, mood swings etc so its essential that i get down on this dose!! I am not sure when you made this post but its Jan 19th to day Maureen Leathem
For info -if you look at post - it says how long ago posted - in this case 4 days ago...
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