In retrospect, I was in full flare when I saw my GP last. I had got down to 2/3 mg from 6 mg in 0.5 mg steps on instructions from rheumatologist and I felt absolutely crippled. That was when my GP told me to go back to 4 mg and come back after a couple of months. Anyway, the 4 mg wasn't doing very much and I ended up back on 6 mg (when I last felt well). Although, I am now very slowly getting better, I am still very stiff and in quite a lot of pain before I take my morning dose and get fatigued easily. I went to see him again today and we talked about "what next" and both agreed that I need to get my symptoms under control and stable again before giving any further consideration to reducing my dose, so I am to stay on 6 mg for another couple of months. He seems to favour sticking on a dose for a full 2 months and then taking stock before making any changes, which I find reassuring.
He was pretty irritated to realise that I still don't have my DEXA results after 12 weeks and is going to nag them again. The radiologist said that my bones looked very good, but I told the GP that I still want the numbers so that I can monitor any changes. He agreed. No mention of the dreaded bisphosphonates, thank goodness.
Anyway, not so much asking for advice, but thought it would be nice to share something positive. I usually have terrible white coat syndrome, but feel cheered up by the fact that I feel that I have someone to go to, who I feel that I can trust. I still have PMR and it is still a nuisance, but I seem to have found someone who actually understands PMR and is kind and supportive and listens, without coming out with any of the nonsense that some of the other HCPs that I have seen have done. There are good doctors out there.
As an aside, just shows how appearances can be deceiving. He's quite young and looks more like a rock star than a doctor. 😄
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Definitely a positive! But if you'd tried the flare protocol we go on about, you'd probably have felt human again much sooner!! Never mind - you are on the way 🥂
Quite possibly. Just following doctor's orders. Though it's only looking back that I realise that I was in a flare and not just rebound. I have terrible issues with getting across how bad I feel and I wasn't allowed to be ill as a child, so I have a lot of difficulty recognising even myself when I am ill. Anyway, that's a whole other topic.
Hindsight is a wonderful thing. I realise now that I shouldn't have even been trying to taper. I've already done the grumpy rheumatologist to death, so I won't have another rant.
I had a gynaecologist like that in Germany, 6ft odd and blond and suntanned - and SO empathetic and good with it. His wife worked in the practice. I wonder why ...
I realised that I didn't say that I had just come back from seeing my GP again when I posted this. It might not have made a lot of sense why I was posting, without that key piece of information lol so I edited my OP. Blame it on the pred brain.
Anyway, that is why I was feeling happy. Initially, I struggled with getting continuity of care with my PMR journey and I've had a lot of conflicting advice from each of the different people that I have seen, which made me lose confidence in them. He seems to know a lot about PMR, or at least must have treated lots of patients with it. And instead of speaking to me like he has a stick up his bottom, he's just a regular bloke that I feel that I can talk to. He's a keeper, for sure.
Well done getting through all of that. I recently saw a new young doctor about my breathlessness. She was very thorough, listened carefully, and was not at all dismissive in the way that some more jaded GPs can be.
It's such a lottery finding the right GP. My blood nurse actually asked me how I was getting on with my GP and said you can ask for a different doctor within the practice if you can’t get on. Mine is very prickly and sticks strictly to the NICE guidelines for PMR but bless her, she diagnosed me straight away and put me on preds. Good luck!
Sticking to the guidelines can work either way. It doesn't leave much flexibility if your symptoms are atypical, in any way, but on the other hand, (in theory) it should mean that you get the relevant tests and follow up that you need. She can't be all bad if you got a prompt diagnosis, as some of us have waited years, especially those of us who were relatively youthful at onset. However, if you are feeling unwell, the last thing you need is a grumpy HCP.
Except as Sarah Mackie explained in her talk - there aren't really any PMR NICE guidelines, They are "advisory" articles written by a third party medical writer distilling the stuff they have found in the literature: someone who has neither managed patients with PMR nor had it themself. So they aren't written in stone - and somewhere they should have the codicil "may have to be adjusted for the individual patient" since every suggested taper I have seen in the literature says that.
Now that you mention it, pretty sure that NICE says that it can be adjusted to the individual or has some phrase like "or in accordance with patient wishes". Last time I looked, there had been quite a bit of updating, so not sure if it still says that.
Tongue in cheek aside, most likely, it has confirmation bias at its core. We all have an innate tendency to take on board that which confirms what we already believe. Some of us are able to temper that tendency and take a more balanced view. If you happen to be the kind of person who likes to be always correct and likes to be in charge, you might experience difficulty in noticing things that prompt you to let go of some of that control. Or maybe that is too cynical.
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