I was diagnosed with PMR at end of May and put on 15mg of Prednisolone reducing to 12.5 two weeks ago. My reduction plan says in a week's time I reduce to 10mg. I am a bit nervous about the next reduction because of the full time care I provide for my disabled daughter and the awful memories I have of being in so much pain before my diagnosis.
Thanks to this forum and all the advice given by PMRGCAuk I am aware of the importance of a slow Pred reduction. This morning I went to regular Thursday GP who I've always had a good relationship with and prefer her to main practice GP who I find very arrogant and dismissive. I asked for 1 mg tablets so I could reduce by 1mg every few weeks. She looked at me puzzled and said they only deal with 5mg and the reduction should have been from 15 to 10 and now down to 5. I told her that wasn't the case and reduction has to be far slower, that the specialist who diagnosed me had written out a slower reduction but she just sniggered and shook her head as if he was an idiot.
I told her I am trying to look after my health because I would hate to go on to develop GCA. She laughed again and told me to stop worrying, assuring me that PMR has nothing to do with GCA. My response was to tell her I was mindful of the care I needed to take with my health rather than worried.
I don't know what has scared me more - her ignorance about PMR and GCA or her closed mind. I am feeling very vulnerable - and concerned about the inconsistent advice that's doled out to patients about this serious condition. I think for the first year after diagnosis we should be under specialist care in order to avoid these fast Pred reductions and risks of relapse.
Thankfully I was prescribed 5mg and 1mg preds.
Maybe the GP googled PMR and GCA after I left just to double check that she was right and that there is no connection between the two. Let's hope so!
Thanks to PMRGCAuk I was able to leave leaflets at GP reception, which I hope the staff will take the opportunity to read and have them at the ready to hand out to newly diagnosed patients.
We have to respectfully but firmly stand our ground although it's easier said than done when you're not feeling that well...
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Mish1920
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I know GPs are very busy and often harrassed, but there isn't any reason to be so dismissive. As you say, she may have looked into things after you'd left when she had more time, and I commend her for that.
Now at least you have a mixture of tablets, and can reduce in line with how you feel. You may be perfectly alright reducing from 12.5 to 10mg, many people are - but at least now you have the option.
As you rightly say, you have the added stress of looking after your daughter, so I'm sure you won't try and rush things, much as you'd like to be off Pred.
Yes, you do have to stand up for yourself, and no, it's not easy, but hopefully you won't be put in the situation again.
and leave a copy for her to read. There's a lot I could recommend but this is short and to the point. I'd also cc the senior partner and practice manager...
That paper is brilliant! Thank you. I will most certainly bring it to their attention.
I'd like to move to another GP practice and can only hope they're better informed, but even if they're not it's about mutual respect and the willingness to listen.
Thank you I have printed it. Just wondering if anyone else has had ear pain at the bone under the ear as I have had this as well as the other symptoms, on the side where the temporal pain is.
It is becoming apparent that ear involvement is not uncommon in GCA. I had tinnitus and discomfort - but never associated it with the PMR (in retrospect possible GCA) until I realised it all resolved with pred.
Although there is variation by English region and even within regions, the average number of patients each whole time equivalent GP has on his/her ‘list’ is in the region of 2000. (Googled it).
The incidence of PMR quoted in UK medical literature, is 84 per 100,000 head of population. This computes as 1.7 per 2000. So each GP on average has 1 or 2 patients with PMR. Some will have none and others might have 3.
(Anyone - If my figures or logic are wrong please correct me here)
I find it hard to equate this with the statement often quoted in the literature that PMR is a relatively common inflammatory condition or even the commonest inflammatory condition.
From the above numbers, it appears you might be the only PMR patient on your doctors book.
This may go some way to explaining the ignorance of some doctors on PMR but does not excuse it and certainly gives no justification to talking down to the patient, especially when it’s on a subject they, in reality, know little about.
But if PMR is a rarity to them, Prednisalone withdrawal shouldn’t be, as it is used in several other conditions.
So no excuse for your GP’s behaviour towards you Mish1920.
Incidentally Pred. is a very cheap drug and can be available privately in the 1mg dose though there should not be any need for recourse to this if you have access to the NHS in the UK, but for patients in other health systems this might be useful. (Of course I am not encouraging anyone to counter their GP’s prescribing /advice!.)
Hope you get the relationship you want from your GP, if you do take the plunge and change, Mish.
Many thanks for that data, it just shows, like you said that some GP's haven't much experience dealing with PMR/GCA.
I didn't want to appear as if I was telling GP what to do, or God forbid, imply I knew more than her, but have hopefully planted a seed that will lead her to research PMR and GCA.
I should change my GP but I'm about to have an angiagram so I'll wait awhile to save complications.
I'm sure I wrote a response - but it's obviously entered the ether!
PMR is relatively uncommon in the general population yes, but it is the most common form of vasculitic rheumatism symptoms in over 60s. So it behooves GPs who see a lot of elderly patients to be at least aware of it.
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GP update 
GCA and PMR 
Update from 5 months ago and new question
When to start reducing 
