Good day to you all, I have recently been diagnosed with polymialgia rhumatica, it was excruciatingly painful and I couldn’t get out of bed, a visit to the doctors led to a blood test which led to the diagnosis. I was started on 6 prednisolone tablets a day as my blood test reading was 80, I have been taking the steroids for a week now and the pain has gone but in 7 days I have only managed to get 4 hours sleep and that was only after taking 2 1/2 sleeping tablets, I look awful and cannot work due to being exhausted and am back at the doctors tomorrow. It says one of the side effects is insomnia but this is crazy and I see no end to this nightmare. I’ve cut out caffeine, sugar and take daily regular exercise but as soon as my head hits the pillow I’m wide awake all night. I really would appreciate any guidance anybody can give me please as this is all very new to me.
Hi alvertta thank you, it’s tough as hell as I’m in a high profile position and have to be on my metal. If this carries on my job will be on the line, then I’m finished.
So 30 is reasonable and early morning is the best time so I'm told - I can never manage earlier than 8 a.m! I found when I started taking a calcium supplement with a small snack (for the sake of the stomach, usually just a tablespoon or so of plain yoghurt) shortly before bedtime I started to sleep well. As I've been a lifetime intermittent insomniac this was quite a change for me. Several years down the line with PMR/pred this is still working for me in spite of some recent serious stress related to moving, Other people have found that magnesium can help them. I think it's worth trying this before adding a new pharmaceutical to your body.
I take calcium dose in capsule, not tablet, form as I find that easier to tolerate. And no single calcium dose should be very large, no more than 4-500 mg at a time.
Hello , It sounds as if the dose is 6 x 5 = 30 . It will get better as you drop but as you can see I’m awake, but it’s not every night now maybe 2 nights a week so it’s bearable . I give up mostly and read . Hope you can get help from GP tomorrow , amitritpylin seems to help some people .
I have taken 25mg since diagnos in Oct 18. My sleep was pretty bad with the pain from pmr but the pred did make it worse at the very beginning. I found that accepting I was not going to get to sleep at my normal time and then falling asleep when my body gave up was the only way to deal with it. It means the time you sleep is different but you do at least get some!! I also take amitriptyline for depression but it is useful for pain and does make come people drowsy which helps with the insomnia. You should explain to your gp how this lack of sleep is getting you down. Good luck.
We have all got different side effects from pred. Some people are lucky and only pick up a few, othemjr a long list of ailments. As there are people from all over the world using the site you can almost guarantee someone somewhere is online to talk to. No doubt Pmrpro and Dorsetlady will be along later with lots of advice. They are very experienced.x
I am a relatively new person on the site as diagnosed in Oct 18. The help and support is really good. I am now going to battle the insomia dragon and will hopefull get a little bit of sleepx
It will get easier -for a change am awake but normally sleep well on steroids.👍The earlier in the day you take them the better and once you start reducing it gets easier honest
I was never a very sound sleeper, so early days of PMR and Prednisone were brutal!
I quickly learned not to toss and turn with frustration, but to get out of bed, make a cup of warm milk or (non caffeine beverage), and have a small carb snack like cracker and cheese. It seemed that the warm beverage and the carb snack triggered sleepiness.
Later I discovered Melatonin which helped enormously.
You will need to try a few different options to find what works for you, and if all else fails...this forum is 24-7, so theres always some one talk to🥰.
This stage will pass, do your best, and grab a nap every chance you get.
That is powerful insomnia resisting 2 and a half sleeping pills! What is the mg value of your Prednisalone per tablet?
My own insomnia was when I was between 20 mgs and 10 it was greatly helped by taking 10 mgs of Amitriptylin one hour before bedtime. Even on a bad night it guaranteed 4 consecutive hours sleep. I just felt more comfortable and relaxed somehow. This symptom lessened as I reduced Prednisalone. Are you also adjusting to a new illness and all the worry that entails, especially if you work? This will be adding to the problem. Please ensure that you pace your activities. Prednisalone is only controlling the inflammation which caused all the pain and stiffness, you are still ill.
Hi Jane my prednisolne are 6 x 5 mg I take them early in the morning say 4 to 5 am I cannot work at the moment because I’m too exhausted to go, the insomnia is the main problem, if only I could get some sleep I could start to function normally again. I have very demanding Jon and am running a department from my e mail at home but it’s fruitl really. I have gp appointment again today so let’s see what transpires. Thank you for your guidance
As you are awake you might try taking your dose at 2 am, this apparently is an optimum time to deal with the inflammatory substance before it is shed into the bloodstream. This may help with sleep. When you are tapering down, don’t be tempted to go too fast.
Well now it’s good morning to you Jane, you know what I thought about that the other day.if I take it in the morning and it keeps me awake at night why try and reverse it so you take it very late night and it keeps you awake all day. I asked the doctor this and she said no way, but I think you have a valid point which I will raise again today with the doctor. Thank you.
Although recommended time to take medication is morning, it doesn’t really matter that much - what suits you best is the way to go.
Most have sleeplessness early days whilst the body is getting acclimatised to the medication, but it does get better as the dose decreases. It is debilitating though whilst you going through it, and yours does sound extreme, so you need to go back to doctor.
I found I could function if I got one good night every 3rd or 4th night - but not working so could rest in day. You obviously cannot do that, so you need to find another solution.
Good morning to you, I appreciate your words of guidance. I am writing down all the advice I have been given last night and will take it to the doctors today, many thanks for you input.
Just experiment a bit and be economical with the details. They are taught it is bad to take pred at night because that suppresses adrenal function more than taking it in the morning. However, PMR is a chronic disorder and you will be on a dose of pred above 8mg for so long you will develop adrenal suppression anyway so it makes no difference when you take the pred - just late night or early morning will improve the day ahead (provided you can sleep).
Hi Andy
Welcome, sorry to hear your diagnosis, so GP has started you on 30mg ie 6x5mg as Heron says normal starting dose is 15-20mg
When l’ve been on high doses I’ve not slept until 4am but it didn’t affect me much the following day, l was managing on 4hours sleep, albeit l wasn’t working.
I’d first like to suggest you try to relax, l know that sounds trite but you need to roll with this for a little while, I’m sure your GP will consider reducing them, he’s given you a big hit to try & help with the inflammation.
When l was on Chemo they give you Dexamethasone so l was taking that on top of my Pred, l was high as a kite; so l asked my husband to move into the guest room so l could read, shop online, email or speak to friends online elsewhere in the world, l just had to go with the flow.
For most people sleep improves as they get to a lower dose. 30 mg is a high starting dose for PMR. The guidelines suggest 15 to 25mg. For many people 15 or 20mg works fine on stopping the inflammation and therefore the pain. Either of those doses may be enough to deal with the daily inflammation. Might you suggest that to the GP?
Melatonin may also help. It worked amazingly for me and I had no jet lag when I returned from New Zealandv10 days ago. You can get it from a health food shop. The recommended dose is 5 to 10 mg, so I am not sure 1mg would do anything. Melatonin is a hormone released by the pineal gland and it regulates the sleep cycle. You take it about an hour before you want to go to sleep.
I feel for you regarding your work. Very worrying...
Good morning to you Mary, thank you for your kind input, so many people have made suggestions and I have written everything down ready for the gp appointment today.
Hi Andy! Sorry you have had to join this club which none of us really wanted to join! But on here you will find lots of advice esp PMRpro and Dorset Lady, Pro probably knows a lot more than your GP does to be honest so her advice is invaluable. I was diagnosed in September 2017 on 30mg of prednisolone - I was in France at the time. For me it zapped the pain which was the killer, but it made me completely hyperactive. I didn't hit the sleep problem until later down the line but it is a bummer. I buy sleepeaze from Boots and find they help enormously.
By 6 tablets I assume you mean 30mg? That is a high dose and actually the ESR level isn't as related to the level of dose require as some doctors think. A more usual starting dose for PMR would be 15-20mg to see if that works before going to a higher dose if it doesn't.
I'd suggest for the moment that you ask the GP to let you drop the dose to 20mg and see if it still works. Then I'd actually try resting more - just go for a walk rather than "exercise" - as the pred may have relieved the pain but the actually disease is chugging away in the background and making your muscles intolerant of acute exercise. And that way you may find you doze off.
And to be honest - consider having a bit of sick leave.
I found taking a few draws from a vape pen with an indica dominant Cannabis oil helpful, especially in the early days when I was on a higher dose, and my mind would race thinking about and processing my new diagnosis of PMR. Not sure if medical marijuana products are legal where you live. As others have said, better sleep usually returns with lower doses, and an acceptance of having a chronic autoimmune condition.
Hope you are able to get some much needed rest soon. In the meantime, some adjustments with your work may be necessary to accommodate your condition.
Sorry to hear that your sleep is so lacking. I’m on 30 mg currently for GCA/PMR and take the dose in the morning about 7-730 am with the PPI tablet. I’m not working so breakfast is usually 40 minutes later. The calcium /vitD combo (Adcal) I take about 11 am and 9pm and with a couple spoons of yoghurt, the nighttime adcal acts as a relaxant/sleep aid. Insomnia is terrible so I hope you can find a way to improve things.
Hi Andy, hang in there. You will find this forum is a wealth of solid, sound advice. Pmr takes some getting used to but you will. I take my tablets around 9pm which is not recommended but it suits me and gets me through the next day. It's very tough trying to work in the early days of pmr. I've been there but still have my job 3.5 years down the line. You'll get there.
Hello I've always had trouble sleeping . I started on 30 mg pred October 2018 now on 19 mg. my GP has given me zopiclone sleeping tablets for when I'm desperate and they do work for me . I feel fine in the morning, unlike with amitriptyline which makes me feel like I've been mugged or hungover in the morning . If I'm not too wide awake I find nytol and cannabis oil help me to drift off to sleep , however don't just get any old cannabis oil . Some are for daytime use and will make you more awake ! If you want to know which one I use I think you can private message me and I can tell you the brand and type I use . So sorry you've joined our club !
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