Lack of sleep after upping pred dose from 1mg to 4mg - PMRGCAuk

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Lack of sleep after upping pred dose from 1mg to 4mg

811Yoga profile image
8 Replies

My pmr diagnosis was in May 24 and I have been attempting to reduce from 15mg. I have posted previously and recently upped my dose without GP advice as I was in so much pain and discomfort around the hips and back. I do have troncanteric bursitis but am seeing a physio but improvement has been hampered by painful hips/pmr together with cpr of 37.

Since upping fro. 1 to 4mg pain has lessened and back is no longer stiff although it is difficult to differentiate between pmr pain and bursitis pain. However my sleep is so disturbed and some nights I begin to feel more sleepy around 5am! Just hours awake tossing and turning. I did take half of a 10mg amytryptline tablet a few nights ago which helped but don't relish being dependant on them. Do you think this will settle. All along the pred journey sleep has been problematical for me. Your advice would be appreciated. Thank you.

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8 Replies
piglette profile image
piglette

I think I might have added 5mg for a week or so to try and really hit the PMR on the head then reduce say 4mg. The sleepless nights are annoying, I just listen to the radio.

PMRpro profile image
PMRproAmbassador

Patience. Your body will get more used to the dose. But the primary thing is to stop WORRYING about the sleep pattern. It isn't actually natural to sleep solidly for x hours - and with pred it is common to wake now and again. You need to relax and learn to sleep when you can. And eventually it will improve.

811Yoga profile image
811Yoga in reply toPMRpro

Thank you for your helpful comments. Hopefully sleep will improve.

Blearyeyed profile image
Blearyeyed

You will readjust to the dose.In the meantime a few days or so of Amitriptyline will not cause you to become dependent, it's a proactive way to use that medication so that you can get the rest which will help you get your inflammation under control and maintain a more normal sleeping pattern until you have adjusted.

What level of physio are you doing?

Not all physios are a like and you may be being pushed to do more , or certain exercises on areas of the body which are overexerting you and causing the inflammation, especially if you are physically active as well.

Not all physios are very experienced in managing chronic pain disorders or PMR.

If you think this might be part of the issue taken a break from physio and ring the department and see if you can have a chat to a Senior Rheumatology Physiotherapist, explain what is going on and ask if you can get an assessment from them and see if there are certain exercises you should avoid at the moment.

811Yoga profile image
811Yoga in reply toBlearyeyed

Useful information thank you. I amseeing nhs physio this week so will speak to him re this.

AyJayBass profile image
AyJayBass

If I have read this right, you were diagnosed in May 2024, and presumably started on 15mg of Pred per day (or similar). ou are now trying to land on 1mg???? If so, that is much too fast a taper. Please read the section on here about tapering plans.

As Blearyeyed has said, a few days of 10mg of Amitriptyline won't do you any harm. I find it very useful.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toAyJayBass

Profile says diagnosed 2023… so maybe a typo in this post…but still a quick taper for many.

811Yoga profile image
811Yoga in reply toDorsetLady

Thank you both. I was diagnosed May 23 but active in mid Jan23. I now have an appointment with Dr Khurshid 11 November so as CPR 37 will take all my concerns to him. I am listening to all you say about a too quick taper. Along with many others I wanted to be off this med ASAP but now through other shared experiences on this site have a much better understanding. Thank you all for your support.

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