Sleep Issues

[suzy1959]

I have been on Pred for PMR for over 9 years now and one of the first nasty side effects I got was sleeplessness. Eventually, I was put on Amitriptyline (35 mgs) which helped a lot and I settled in to having to get up twice a night most of the time.

For the last couple of years, however, this seems to be increasing to at least 3 times a night and quite often every hour! I don't think I am getting good enough sleep now and in amongst huge pain issues, despite having 2 new hips and 2 new knees, I would like to change this if I can. It is not the pain disturbing my sleep most of the time.

I am pretty sure this is not caused by the need to pee so much as waking up and then becoming aware of my bladder.

Has anyone got any useful suggestions? I will be talking to my GP on Monday in the hope that he might have some ideas.

[PMRpro Ambassador]

Just to say - we are here, but HU is messing about (again) and not telling us there are new posts.I can't help a lot because while I often wake at night, I never really need the loo! I do recognise the problem of awareness - because sometimes I do get up and go to the loo just in the hope I will go back to sleep!!! What I have found that seems to ensure a good night's sleep is taking a magnesium supplement at bedtime. Others find they sleep better after taking a calcium supplement.

[Nextoneplease]

Hi suzy1959

I too suffer from very broken sleep since being on pred so will be interested in what people have to say. I’ve always been an insomniac, but once I got to sleep, I used to sleep well. No longer! Am awake at least every couple of hours and generally in the morning feel tense and tired and have bloodshot, puffy eyes. Like you I’m pretty sure it’s not my bladder. In my case, I think it’s frustration, anxiety and an inability to get sufficient exercise to relax me (because of PMR and other health issues).

Like PMRpro I’ve found a magnesium supplement to be of some help, but it seems to be wearing off. Worth try, though, I’d say 😊

Good luck x

[11caroline29]

I can totally relate to your problem with insomnia. Been on Pred almost 8 years and really poor sleep. Been on Zopiclone for few years which helped at the start but no longer works. However my new Rheumatologist suggested I try Trazodone 50mg an hour before bedtime and it has been amazing. Yes still up couple of times to toilet but that’s nothing to being awake hourly. I had given up ever having a decent sleep again so maybe worth a try?

[Nextoneplease in reply to 11caroline29]

Hi, I had zopiclone while I was in hospital a few years ago and it was amazing. I found it very difficult to get off it though and my GP (when I had one who knew me), refused to prescribe it on an ongoing basis. I think he was right in the long term.

I’ve considered amitryptiline but not Trazodone…..glad it works for you 😊

[Amkoffee in reply to Nextoneplease]

Never stop talking Trazodone without tapering. That said it worked great for me for many years.

[Nextoneplease in reply to Amkoffee]

Interesting, thank you 😊 I am trying still to manage without sleep meds, as I take so many others, but will remember this if I have to take something x

[Amkoffee in reply to 11caroline29]

I took Trazodone for years and it worked like a charm, until it didn't. Suddenly about 6 months ago it stopped working. Now I struggle. But my main reason for commenting here is to warn you that you should never stop Trazodone cold turkey. Always taper it.

[Sharitone in reply to 11caroline29]

Does Trazadone not have the same problems with dependency? Zopiclone has been great for me, and I have been able to very slowly reduce the dose with a decrease in pred. But I can foresee the time when it will no longer work!

[11caroline29 in reply to Sharitone]

Zopiclone no longer works for me and only been on Trazodone for 3 months and certainly no plans to stop it. I’m only on a small dose of 50mg at bedtime but can be increased if needed in future. It gets to the stage you would try anything for a good sleep. My insomnia did not improve when I reduced Pred from 40 to 5mg. Currently on 9mg. Probably the worst side effect of Pred for me along with steroid induced diabetes.

[Hidden]

I think as we all age sleep is so hard to come by. Some nights I enjoy 6/7hrs and others I know instinctively that I am not going to sleep, and don't all night long. I think I'll try one of my husbands Amitriptyline, his are only 10mg though. An antihistamine does it for me some nights, and others has no affect at all. Steroids certainly don't help the sleep process. I'm struggling with pain today, shoulders and arms are so bad....looks like another increase for me. Nine years with PMR/GCA fill me with dread !! I had a blood test this morning to see how high my inflammation has risen. I can then hopefully judge how many mg I should be taking.

Good luck

[Blearyeyed]

It's a common side effect with the drugs you take , you may also be taking other medications or other enviromental issues could be added to the waking sleep.

Would you mind adding what doses you are on of your Pred and AmyT now , and if you are happy too could you say if you are on any other medication?

is the sleep the only change or have you noticed any other pain and symptoms , or changes in your daily activity that might have added to you waking up more?

Any extra information might give us a clue on what could help , thanks , Bee

[DorsetLady PMRGCAuk volunteer]

Have you read through this - healthunlocked.com/pmrgcauk...

[Pr0jection]

I also have the same problem, wake up every couple of hours and use the loo but nearly always go back to sleep, albeit only until about 4.00 a.m. I have found that camomile tea and a quarter of antihistamine help me relax.

[Hidden]

You're totally off Pred, you lucky thing. How long did it take you and did you yo-yo at all ? I'm starting my third year of Pred and do well until I reach the 6mg mark, then up I go again...currently taking 10mg. What sort of regime did you use ?

[Hidden]

Hello Suzy,I don’t know whether I am going over old ground here, but I take prednisolone and found, after a while, that taking it early morning prevented me from having a bad night, I had previously been taking it later in the day. Also my sleep has been better since I have been taking a lower dose of prednisolone. The latter has followed a period of gradual tapering, however. Interrupted sleep can also become a bit of a habit, so I find that some sleep aid like valerian taken for two nights has got me back to a more regular sleep pattern. Hope it helps.

[kiwijenn]

I am an herbalist and one of the most successful remedies I have found is taking care of nervous system all day vs just at bed time. A tea of skullcap and chamomile infused 4 times a day relaxes nervous system. Then at night taking lemon balm or another sleep herb. Clients I have had complain of comstipation w trazadone which is an antidepressant.

[Caloo650]

I also suffer with restless legs that can keep me awake for hours. I have learnt to meditate and do so for half an hour before bed. When I feel my body is completely relaxed I slip into bed. It works 90% of the time. It helped through the higher doses of prednisone as well.