I posted this reply in response to an enquiry about managing PMR without pred. and have been asked to post it separately. I try not to talk too much on the forum about my own problems - but sometimes it is required so excuse me indulging!
It is possible to survive PMR without pred - whether I would call it managing it is an entirely different matter. It really isn't much of a life - as it progresses the pain, stiffness and disability get worse.
I had PMR symptoms for 5 years without being diagnosed with anything or offered pred. Within 6 hours of taking the first 15mg pred I was able to move without pain, walk down and back up stairs normally instead of stomping down one step at a time like a toddler hanging on to the rail in case I fell and crawling back up on hands and knees, placing the cup of tea as far up as I could reach and crawling up to it.
It started in the early spring when I couldn't sleep comfortably in my usual position with my arms above my head. Over the course of the summer it became increasingly difficult to do my gym classes - I struggled to step up onto the step, in Pilates my balance was not as it should be, I couldn't lie on my side as the outer aspect of my thighs were sore (trochanteric bursitis). The final straw was in the autumn when I wanted to use the cross trainer in preparation for the ski season and after a couple of minutes the pain in my thighs was excruciating and I had to stop. I had to change gyms to one with a warm pool and aquafit classes - that was all I could do and I even struggled with that for the first few months.
That went on for 5 years - GP insisted there was nothing wrong, just my age, the bloods were fine. I was the grand old age of 51 the summer it started!!! I thought I was doing fairly well but was never out of pain. Ever. Then I had a flare of symptoms and another problem that led to me having to stop driving for a while (wrongly as it turned out) and that was when I discovered how bad things were. We had recently moved to a house without a loo on every floor - and doing the stairs so often nearly killed me. I couldn't drive - the only way I could go anywhere alone and even then only if I could drive to the door and not walk. I was confined to the house, isolated and in pain.
I managed - god knows how - to get here to our flat in Italy. It took a full 24 hours and I went to bed for 3 days when I got here. No stairs! Bliss. I managed to get my ski gear to the storage at the bottom of the lift - and dragged myself there in the mornings. By the time I had done one very short run I could move better. After 3 I went home after sitting in the sun for a hot chocolate. I couldn't do one long run - I had to have the rest on the lift. After a week or two it was a lot better in terms of stiffness and the hip pain was a bit better because of no stairs, just walking on the flat. I was almost back to normal as the flare faded. But I still had pain. Every afternoon I spent on the computer looking. And finally found polymyalgia rheumatica - by accident, mentioned in a blog. The lady the GP described fitted me to a T.
I eventually went home in April and went to the GP and told him what I thought it was. He referred me to a consultant, luckily only a 6 week wait. A new consultant - obviously thought PMR was beneath him and he wouldn't listen to my version of my symptoms but he DID give me 6 weeks of pred to carry me over a working trip to the USA for a meeting. That was when the 6 hour miracle happened. It continued through a taper of 2 weeks each of 15/10/5mg - and 6 hours after missing the first 5mg tablet I was in as much pain as before and in bed in tears. A dfferent GP took pity on me and gave me more pred. I returned to the consultant - and he ignored the evidence. in fact, even without a diagnosis I didn't see him at first, I was handed to a GP "with a special interest in rheumatology" who admitted he hadn't a clue. The letter sent to the GP bore no resemblance to the consultation I had had, and everything he wanted it to be had been discounted with tests. Luckily I was moving here so couldn't be started on the drug he wanted to use and was able to continue with pred. No-one here has disputed the diagnosis.
That was nearly 11 years ago. I am unusual, I have a relapsing form of PMR, I never get to a low dose of pred before the next flare happens. Without pred I wouldn't have a life.
The reality is not just a few months and it will burn out - 1 in 5 patients is off pred in under a year, just over a third in 2 years and half by 6 years. Half of patients need some pred to manage symptoms for more than 6 years, nearly 40% are on a low dose of pred after 10 years.
And there is no way you can tell which group you belong to in advance - there is no link with severity of symptoms or response to pred.
So, in addition to the fact that untreated PMR may lead to GCA where the choice is stark, use high dose pred or risk losing your sight, do you think you could cope even with what you have now unendingly? And it is quite likely to get worse - one day you too might wake with the flare that leaves you almost unable to get out of bed.