In the UK a decent GP would initiate the pred - even if only to see if it helps. There are also GPs who won't take the step and a wait for a rheumatologist is as long in the UK. However - if a GP offered me pred to see what happened in the meantime, I'd take it! For completeness I'll copy and paste the post I wrote to you on the other thread at the end - I've had no notification of this one for some reason. But there is more:
To deal with the other questions - on that basis the 5 years I waited could be said to have made my journey longer and more complex - it has certainly been much harder believe me. I had some fairly rough months nearly 4 years ago, I never considered not taking pred, it could have been even worse. I certainly have some cardiovascular damage from the inflammation.
Is your GP convinced about the diagnosis? PMR is only a name for a constellation of symptoms that can be caused by a wide range of underlying causes - taking 15-20mg pred for a week or so (as described in the "Bristol paper" ) is a way of sorting out the sheep from the goats. If it doesn't have a speedy and noticeable effect - it may not do anything. LORA (Late Onset RA) can present exactly the same way - but tends not to respond so dramatically to this moderate dose of pred. The relief won't be 100% but the improvement should be about 70%. You are young - it COULD be something else.
You may be fit now - so was I when my PMR started and rarely took pain-killers for a headache or anything else, I put up with it. Is that a sign of a high pain threshold? If so - I feel qualified to say that as yet you have no idea what pain every day, all day, over months and years can do to you. PMR is associated with depressed mood anyway, add constant pain to it and you will definitely get depressed. I lost muscle tone and put on weight because I was so restricted in what I could do. I simply couldn't go out and join in with my friends, I became isolated - and I know others have said the same. I couldn't do things in the house - not being able to do the housework was no hardship but it doesn't keep the house clean and tidy. I couldn't hold things, I had no strength to do things - it took me the entire morning to change bedclothes, in stages. I couldn't garden, I couldn't walk far. It affected my relationship with my husband and the rest of the family - I couldn't bear to be touched because everything hurt. I was even more uneven tempered than usual. I lost my hobbies.
My grandfather and a great aunt both almost certainly had PMR in the 1950s, pre-pred. I can't remember how long they had had it, but I remember neither of them without it. My aunt had it in her 60s - and died at nearly 90.
It is believed that once you have an autoimmune disorder you never recover from it in the sense of being "cured". The autoimmune disorder may go into remission - but it can lurk there and revive at some point. I know at least 3 people who have had it twice - 2 of them have recovered again and both say the second lot was far harder than the first which had run relatively smoothly.
If you haven't already seen it, there is lots more info in the links you'll find in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
The other post:
"I "did" PMR for 5 years - but not out of choice! I wasn't diagnosed, I was young (51) and had no abnormal blood tests - my ESR and CRP have never been raised, ESR hit the dizzy heights of 7 once, it is more usually 4. I work freelance so never had to get to work for a given time and it was all sitting at a computer translating. Every morning Mon-Fri I went to the gym for an aquaerobics class in a very warm pool that I could walk down steps into. Otherwise I couldn't have got in or out and the warmth helped, if it was colder than usual I couldn't do the class. After that I could manage a Pilates or yoga class with adaptations. Nothing else in the gym except the PowerPlate. Then I went home to work.
Eventually I had a big flare and could hardly move. Getting going in the morning took well over an hour - I could hardly get out of bed, I couldn't dry myself after a shower. At the same time, for another (incorrect) reason, I had to stop driving for about 6 months it turned out in the end. I crawled up stairs on hands and knees, down like a toddler, one step at a time and couldn't walk more than a couple of hundred yards at snail pace. During that 6 months I researched and eventually found the answer my GP couldn't: PMR with normal blood markers.
I was sent to a rheumy who didn't listen and decided it couldn't be PMR, he wanted it to be anything but. I was going to a meeting n the USA and he gave me a 6 week taper 15/10/5 mg/day for 2 weeks each. I took the first dose at 10.15am outside the pharmacy. At 4pm I walked downstairs and back up again carrying a cup of tea - something I hadn't done for a couple of years. The cup would be sat on the highest step I could reach, I pulled myself up a few steps, rinse and repeat. I could barely hold a cup of tea to drink it anyway. I was good at 15, OK at 10, I could live with 5mg - but by the afternoon of the first day with no pred I was in bed in tears. The rheumy didn't want to hear - but a different GP listened and gave me pred. It never worked as well as that first taper though. I had a major flare nearly 4 years ago because of being switched to Medrol which doesn't work for me. I had the same miracle the day I started the only other corticosteroid available here.
I have now had PMR for 11 years and it hasn't burnt out yet. The literature reckons about 25% are able to get off pred in under 2 years but as a group remain at a higher risk of relapse. About half take 4-6 years and the rest take longer, some never doing so though of course they may be the ones whose adrenal function does not return fully. The major German rheumatology text says 5 years average duration for PMR. Those figures fit well with what I have seen on the 3 UK forums over the past 6 years or so.
My first 5 years were relatively mild, I could still move after managing stretching/exercise. But that first big flare left me immobile and housebound since I couldn't drive. The contrast with being on pred showed me how much I had modified my lifestyle to accommodate it. Put into a different situation I couldn't function without "my" house with kitchen adapted for me, toilets on each floor and so on. PMR robbed me of most of my 50s, either because of the non-management with pred or because of the flare with Medrol. I can't have them back and I'm nowhere near as fit as I was before. OK, I'm 10 years older, but even so, I'm not old.
If you could guarantee it will burn out in 18 months to 2 years going without pred would be a reasonable option perhaps. If it is mild. Our grandparents did, so can we on that basis. Except we have other expectations and committments - working with PMR is NOT easy, whatever it is you do. And when it gets bad - you may not be able to walk, work, carry out normal daily activities without help - and even not be able to toilet yourself. Or get up off the toilet or out of a chair.
And it isn't as simple as that. PMR (or its cause) leads to inflammation all over the body, mostly in arteries and the microcirculation. This damages the tissues and leads in the longterm to an increased risk of other cardiovascular problems including peripheral arterial disease, high BP, cardiac problems including atrial fibrillation and other arrythmias, and even some forms of cancer. Using pred does probably reduce those risks. If PMR progresses to GCA that involves the arteries in the head you are at risk of losing your sight without pred. There is some dispute as to whether using pred in PMR reduces the risk of progression, some say it does, some don't.
But - it isn't a straightforward option. Don't forget that."