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.
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,
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.
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.
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.
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...
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
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!
Hi Margaret, I have pain all day too, mostly in the hips, worse in the mornings. I was also on 20mg and am now on 10. I am keen to cut down, and am wondering if I should do o without the Dr's permission. I don't know if the all day pain indicates we shouldn't cut down.
I know another who has PMR and she also is on 10 and has no pain at all.
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.
Did you have pain at 20mg? That is your guideline. You are looking for the lowest dose that gives the same result. If pains that weren't there at 20mg return - don't reduce further. Either return to the last dose that was good , wait a month and then try again or ask your doctor about the possibility this is something else such as bursitis or myofascial pain syndrome. Both are as much part of PMR as anything else but do respond better to targetted treatment.
Hi FlipDover, Can you tell me if you had to pay for Actemra or is it on PBS? I live in Qld. Cheers. Kath
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.
Big difference - exercises just irritate the bursa.
My physiotherapist is angel. I'm so lucky.
I'm quite keen on mine too!!!!!
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
Hi Eileen, thanks for your reply, I have never heard of those two, I will look them up. no the pain was still there at 20mg, though not as bad.
Margaret & others in this discussion, I gave the exact same problems as you. Diagnosed 3.5 -yrs. ago &,was put on trial of 10mg prednisone within days I felt like Superman, my life was back. It was short lived, thus the increase, then decrease, then the increase back & forth of the prednisone. I've never really felt as I did those 1rst few weeks, months of starting the prednisone. I also have bad bouts of fatigue, which we know sleep has nothing to do with, U'm frustrated, depressed daily due to having to give up so much. I'm type-A, obsessive compulsive person & just does me in not being able to go, go, go, do, do, do, as I used to. I'm not a good couch potato, T.V. daytime watcher, or reader. I feel guilty not accomplishing things every day. I was so hoping, praying the PMR would leave me after 2-years as they, our Dr's, tell us PMR often does ? Thanks, Frustrated in MI.
New work has confirmed what I've said for the last 8 years - PMR lasts up to about 6 years for a lot of patients. And for a few of us it lasts longer.
I also think that starting patients on a higher rather than lower dose works better in the long run. 10mg might work in the early stages of PMR but if the underlying autoimmune disorder increases in activity it is useless.