Are we ever pain free

Posted , 18 users are following.

i am interested to know are we ever pain free with PMR. When I was diagnosed, March ‘16 I was put on 20mg of predesolone and within  a few days I was free from pain. As I have been reducing, now on 11mg I never feel as if the pain in hips and shoulders have gone even though I rest as much as I can during the day. I have noticed if I get on my knees to wash the  floor etc  I can just about

get up off my knees by having to hold onto something they are so painful, I was  wondering if anyone has the same problem, or do I have something else going on. It is even painful getting up from the sofa. 😒

Thank you in advance for your help.

 

2 likes, 29 replies

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  • Posted

    Really the level of pain you achieve when you start on the pred is your guideline. As you reduce slowly you should always be looking to be sure your pain level doesn't increase. If it does - you go back to the last dose where you didn't have pain, wait a few weeks and try again. Some people are never totally pain free - which is why you take the starting dose result as your guide.

    Some pain, the bursitis for example, is likely to take longer to fade away - my hip pain due to trochanteric bursitis took up to 5 or 6 months to disappear although it was a lot better very quickly. It comes back occasionally but my doctor gives me a steroid injection specifically for that. Raising the oral dose doesn't really work as well. So did your shoulders and hips hurt at the start? 

    It is very common to find back pain from tight or spasmed muscles alongside PMR - often due to myofascial pain syndrome. Maybe that is worth considering.

    You say it hurts when you get up from the sofa - what hurts? 

    I haven't washed floors on my knees since I've had PMR - and using a long mop doesn't do my back any good at all! Maybe it is less "resting" you need to do and rather changing what you are doing when not resting if you can, 

    • Posted

      It’s my knees that hurt, I know, what am I doing washing the floor on my knees. I have had scans on both shoulders and have steroid injections in both shoulders, free of pain is short lived. I am frightened to go back to 20mg from 11mg it seems such a big jump. Any advice please.
    • Posted

      Why not try 15mg for a bit? I have just said to someone else - I have gone back to 15mg 4 times in the last 8 years. But I won't compromise. If I need more pred to fell well, I need more pred. Life's too short...

    • Posted

      Hi Eileen - long time no chat!

      I find your comment about hip bursitis quite interesting - I remember once you mentioned that it was quite common to have it alongside PMR - or even a precursor - which I believe was my exact case. I was having extreme hip pain for at least two years before PMR hit me. Then I had cortisone in each hip 15 months ago and the pain hasn't returned - at the same time I've gone completely off pred and into (drug induced) remission (thanks Actemra) - so it seems a fairly clean cut link to me!

       

    • Posted

      Hi Flip - after all your trials that is really good to hear! Oh - I'm totally convinced of the link! And one or two doctors seem to be getting it too. If a patient with PMR has bursitis, it won't go on its own easily though mine did originally after about 6 months - and it certainly won't respond well to physio exercises which I think are actually more likley to add to the problem. It isn't a structural problem which is what the physio addresses, it's an inflammation problem.

    • Posted

      Hi FlipDover, Can you tell me if you had to pay for Actemra or is it on PBS? I live in Qld. Cheers. Kath
    • Posted

      Yeah, I had the hip problem too, which went away with pred and physio - but my physio wasn't exercises, it was dry needling and low intensity light therapy.  For several years I hadn't been able to sleep on my side, but even that got sorted out by getting rid of hip pain.  

    • Posted

      Big difference - exercises just irritate the bursa.
    • Posted

      My physiotherapist is angel.  I'm so lucky.  

    • Posted

      Hi Eileen I looked up the Mayo Clinic website about  Bursitis, I did what was suggested how to test your knees, I don’t have swellling or painful to touch. I can move both knees lifting and stretching. It is painful and difficult to get up off the floor or sofa and some  times the loo. I started on 15mg of predesolone this morning, I will see how it goes for the next 3 to 4 weeks and see if there is any relief in knees and shoulders. I appreciate your advice. Thank you
    • Posted

      Hi Margaret.  Has your rise to 15mg of prednisolone, three days ago, eased your pain?  For me, a jump in prednisolone makes a big difference in PMR pain within a couple of days.

      Now 100 days on prednisolone, my strategy has been to raise the dose 1 mg at the first hint of bilateral, PMR, shoulder pain.  Consequently, I have been mostly pain free, tapering from 17/7 to 11/7, with just a couple of brief backtracks.  

    • Posted

      Hi Joydeck I still have pain in my shoulders, probably not as bad since I upped to 15mg predesolone. The stiffness in my hips has certainly eased enormously, my knees are still stiff when I get up from the floor, maybe  something else is going on with them. It scares me going up and down with the doses of predesolone. I will try again but only reduce 1mg at a time after a couple of weeks on 15mg. I was only diagnosed 10mths ago, what is the saying Rome wasn't  built in a day if only. Thank you for caring. as Michdon would say keep smiling I am trying. 

       

  • Posted

    Hi Margaret, 

    Initially I had great relief from everything, pain wise, shoulders hips etc, but now I'm down to 6mg my hip pain is one sided and must be bursitis, although I have had 2 steroid injections recently to my right hip with minimal relief, which is very disappointing, and yes I have to pull myself up from the floor with the aid of furniture as without I find it very painful on the knees and hips. I hope you find relief soon.

     

  • Posted

    Hello Margaret, I have had PMR since 2014 and initially the prednisolone worked wonders.  However, I do now find that I experience some discomfort/pain when doing anything requiring more than a bit of muscle.  I have put that down to advancing years (I'm 73 now) and muscle weakness - the less I do, I think the muscles become weaker anyway, and also weakness of arms and legs and muscle weakness generally is an acknowledged side effect of prednisolone.  However, living on my own some jobs have to be done and like you, getting up from the floor does require some help from the surrounding furniture.  However, when I remember what is was like before prednisolone when I couldn't even get down on hands and knees, the current problems are nothing.

     

    • Posted

      Thanks Diana. I need reminding sometimes, about simple things like what it was like pre pred. Getting down on my knees then was extremely painful. I still have pain nowadays, but I can get down on my knees now . Getting up of course can be amusing - not enough exercise I suspect

       

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