SLEEPING PROBLEMS

hello, i hope others reply to your query, with good hints etc, i also find once i am in bed i cannot move to turn over etc. now i more often than not sleep propped up so i am virtually sat up. i take zo morph and a small dose of 10 units of amtripoline which enables me to get a good nights sleep. if i lie down i find my knee joint aches and keeps me awake, and if i sleep on my side the hip aches, so being propped up is the best for me. good luck margaret.

Hi Ada and welcome!

If you have been reading the recent posts you may have noticed that we have been discussing something very like what you are saying. I have noticed a trend over the past weeks for posts by patients who are desperate to get off steroids or whose doctors are trying to get them off the steroids before they are ready. Yes, steroids have side-effects, some of them are nasty, but most are not particularly serious. If you have serious side-effects then there is a place to try to use other things but there is no cure for PMR. The steroids do not cure it, they allow you to live a reasonably pain and symptom-free life where you are not dependent on others as carers by reducing the inflammation which is the cause of the problem.

I will stick my head above the parapet (as usual) and say that I think your doctor is wrong. The pain you are complaining of is the sort that would count amongst the symptoms of PMR. I certainly had hip and knee pain and difficulty in turning over in bed and difficulty getting up out of a chair - all typical for PMR. Just because your ESR is at a normal level does NOT mean the PMR is inactive - I will say it again (for about the 7th or 8th time in a couple of weeks I think in various places): the ONLY true guide to whether you are on the correct dose is whether you are symptom-free or, at least, able to function well at that dose. If you have pain and stiffness that continues over weeks it is NOT from steroid withdrawal, that will improve over a period like that. It is because the steroid dose is no longer controlling the inflammation and allowing the pain part of the syndrome to reappear.

In most people this sort of pain will increase as time goes on until it reaches a steady level - I have that as I try to reduce from 13.75mg every second day. At 0.5 mg less the pain appears after 4 or 5 days and increases steadily until after 2 weeks I give in and go back to the higher dose. Most people who have pain when reducing the dose find they have a rough week as they initiate the drop in dose but after a week it settles and they then return to the state they were at before the drop. Knowing this, they plan a drop when it will not coincide with a busy week and keep their heads down until they feel better! You may also need to up the dose a bit if you are under any stress - an infection, an injury, travelling, busy at work. This is something you should have been warned about at the onset of taking steroids but it does appear that most doctors are also unaware of this. It is because your own body normally produces cortisol in response to such situations but is unable to respond normally while you are taking steroids so you need to add more to the mix temporarily before going back to the usual dose afterwards. This is why you must always tell anyone who needs to treat you (GP, dentist, physio, hospital doctors) that you are taking steroids on a long-term basis and carry the blue card for an emergency.

There are many patients who have normal or even low ESR results, and most of them are amongst the younger cohort who tend to present with less typical symptoms. I have never had a raised ESR, even when I could barely move last spring, and I have had the symptoms of PMR for more than 5 years now. It was always that sort of pain that woke me and I rarely slept through the night for 4 or 5 years - no wonder I was exhausted!

Go to the pmr-gca northeast support group website (google those words or look for the link on MrsK's posts) where you will find the officially approved guidelines for the diagnosis and treatment of PMR and GCA where I'm sure it mentions the atypical presentations. There is also a lot of other advice for you and your GP. In your position I would be asking to try upping the steroid dose a bit to try and reduce the pain - you are at a very low dose and side-effects are likely to be minimal anyway. Your GP may be one of those who believes you must be over the PMR since it is 3

Hi guest m.edwards!

Welcome but do feel you can register and join the community as it makes it so much easier to identify who's said/asked what.

Have you been given a diagnosis as to what is causing these problems? Whilst there are possibly other considerations, the brief description you have given is typical of problems several people on this forum have had in association with their PMR - the joint pain and inability to turn over in bed, for example, are very common in polymyalgia rheumatica.

If - and I repeat, IF - you are a member of our select group :wink: , then the medication you mentioned will do nothing to help the pain and discomfort. At the present time the only effective treatment for PMR is a suitable dose of prednisolone and, if it is PMR, you would get considerable relief within a couple of days. IT IS NOT A CURE - it will relieve the inflammation which is the cause of the pain and allow you to live a reasonably normal life.

If you go to the pmr-gcauk northeast support group website (find it by googling or look on MrsK's posts) you will find articles by patients and doctors about living and dealing with PMR together with official medical guidelines for the diagnosis and treatment of PMR aimed at your doctor. Keep reading here and look at that site and come back and tell us more - we're all always ready to listen and offer advice,

EileenH

Hello ADA

It's good to hear that you have been watching this site during your journey with PMR and finding it informative. Like you, when I discovered it a few years ago, the realisation that I was not alone in this illness and that I had someone to share the experiences with was such a relief.

You say that you haven't got a raised ESR now but did you have raised markers at diagnosis and do you have regular CRP blood tests as well? I ask because I had very raised ESR and CRP markers at the outset which were brought back to normal with the steroids. I've had two or three flare-ups over the last 3-4 years and on each occasion together with the increased pain found that the ESR and CRP also increased. Like your GP, my rheumatologist is also of the opinion that as it has always been the norm for my blood to be highly sensitive to the PMR, then any discomfort I experience now on the very low dose while ESR and CRP results remain normal is due to the steroids being withdrawn from the body after such a long time. I try to counteract the increased discomfort by tapering the dose incredibly slowly, for instance after staying on 2mgs for over 4 months, I have taken 11 weeks so far to try and reduce from 2 to 1mg. In the last 10 days I have reached 4 days at 1mg followed by one day at 1.5, then 5 days at 1. I may do another day at 1.5 tomorrow and then (everything crossed!) I may finally reach 1mg.

Like you, I also have difficulty turning over in bed and getting up from a chair but in my case I have a spinal problem so there is some confusion there as to what is my spine and what is PMR! When you say that you have hip and knee pain during the night, I was wondering whether you, too, might have a spinal problem but that would not appear to be the case if, as you say, you are able to walk distances and play golf. Do you think you might be walking too much when golfing thus aggravating the nights?

One big question in my head at the moment is that I am waking up repeatedly on and off from about 5 am onwards and am thinking it may have something to do with my adrenal glands kicking back in trying to make their full cortisol (steroid) production again now that the large chemical dose has been reduced as that is the normal time of the morning for the body's usual production.

We all have so many questions in our heads relating to PMR and I guess we will continue to have them whilst the search for cause and cure continues!

May you sleep well tonight :zzz: !

MrsO

Hello there

I also think your PMR cant be under control if you are having these symptoms as they sound typical PMR ones I remember clearly the not being able to get up and walk properly across a room after sitting for a while so it was always awkward in public places !!

I am one of the ones who my bloods tie in with how I am feeling unless I have other infections present but I know lots of others on here dont have that

I personally think now not to worry about taking the steroids as quality of life is the most important thing to me so perhaps you need to visit your Dr tell him seriously how mucch this discomfort is affecting you and if not happy to increase your steroids a Rheumatologist must be the answer I am a different person if I havent had a decent nights sleep and if it goes on for a few nights I take a Nytol ( the ones from the pharmacist not on the shelf ) and that sorts me out

Hope you feel better soon

Best wishes Mrs G