Not diagnosed yet

What dose of pred were you on that worked? Without knowing much more about that it's mpossible to have any opinion. 

The way pred is used, dose and reduction of that starting dose, is crucial so if your GP got that wrong it won't have worked. 

Apart from anything else - if you take 15mg of pred to start with and then go out and do all the things you haven't been doing you will overuse your muscles and they will hurt again. PMR makes your muscles intolerant of exercise and the pred doesn't change that much, it just manages the inflammation to relieve the pain and stiffness. But it must be used the right way and you must do your part - by resting and pacing yourself.

I was on 20mg, to start with it was wonderful within 6hrs of first taking it I was amazed but gradually over the months the pain came back and the stiffness got worse to the extent I couldnt get out of bed for work one morning the after 15 mins of trying and my arms and hips hurting so much I just lay there crying as I knew to move was going to hurt and I didnt want to hurt. So my Doc weaned me off Pred and tried the other things, TBH the pain and stiffness seem worse some day than other just like when I was on Pred, so I am a bit at a loss as to wether it is or not. My Doctor thinks it is more than likey that the Specialist will put me back on pred but a higher dose.

Yes I have had numerous blood test for loads of different things including Lymes and parvo virus, I started and stayed on 20mg Pred for 3mths before my Doctor weaned me off them as after the initial result there was no improvement, which is why I am now on Arcoxia, Oh well its a waiting game then to see what the Rhumy thinks.

I am sorry that you are still in pain.  The one good thing about PMR is that, for most people, the right dose of prednisone controls the pain.

So, your first question is whether you have PMR or something else. I think the symptoms vary a lot, so this may be hard to tell.  Your description of lying in bed, unable to get up and anticipating the pain is certainly something I recall! (I learned to slither to the edge of the bed and roll off onto my knees.  Then I only had to deal with standing up from there.)  There was a lot of yelping.

Heaven forbid I needed to roll over in the middle of the night!  Excruciating!

One of the signs is whether you can raise you arms.  (Severe pain that stops you from this is a sign of PMR.) Is the center of your outer upper arm tender to the touch?  (One proposed test for PMR is applying a blood pressure cuff to the arm, pump it up, and see how long it takes for the patient to start screaming.  Well, they did not explain it in exactly those words…)

Rapid response to prednisone is one of the criteria used in diagnosing PMR, which argues against your having it.  I had all the classic signs except I had a slow response to prednisone and needed a higher dose.  The symptoms did not clear until I had a week on a high dose (up to 60 mg because of suspected temporal arteritis) and I then sometimes required up to 25 mg (when traveling caused a relapse). My doctors are suspicious of the PMR diagnosis because of my failure to respond to prednisone the way most people do.  However, I am now down to 10 mg and have no pain at all.  So maybe some of us just need to hit it harder at first?

I have not heard of prednisone becoming less effective over time. However, in the reading I have done on this (I’m not a doctor!), I have come across something called “corticosteroid resistant PMR.”  For these patients, methotrexate and tocilizumab seem to work, though not nearly as quickly as prednisone.  Tocilizumab blocks activity of interleukin-6, a protein that (among other things) promotes inflammation.  Interleukin-6 levels are high in people with PMR.  (Other studies showed methotrexate did not have a significant effect, but they did not separate prednisone-resistant cases, which may respond differently from run-of-the-mill PMR.) I can send you references or links in a private message if you like.

I’m not sure this is helpful, but maybe it will give you something to ask the rheumatologist  about. 

I really deeply sympathize!  I suffered extreme pain for only a few weeks and can’t imagine facing it over the course of months.  Best of luck with a speedy diagnosis of something that can be treated!

Had a really bad night last night, every time I turned over the pain in my shoulders was excruciating, it now feels as though my neck is now becoming part of this as it is really stiff but then again it could be because of the way I am sleeping to try and stop the pain. I sleep at the moment with a rolled up pillow that I cuddle when I am on my side so it supports the shoulder position more, but even so I stil wake up in agony. I am getting to the point where alll I am doing is crying because of the pain obviously the pills are not working, my Doctor doesnt seem to know what to do and is waiting for the Specialist to give him the answers.