Rheumy appointment - not sure what to think

:-)

Just wanted to ask a question here as I was diagnosed with PMR Tuesday in a 10 min gp appt so as you can guess not much time to ask much and told to come back in a month after reading your forum this week have made an appt for tomorrow to ask for vit d déjà scan etc but no mention of referral to rheummy has been made should I ask for one is this normal practice? So to hijack the original question

Hello jilly, if you have been diagnosed with PMR only then you do not have to be under a rheumatologist. Please read Bristol PMR plan for advise on reduction. I followed the plan until 9mgs then I had a flare. Following the flare I then followed Eileen's slow reduction regime and I only reduce only by .5 mg. what's important with this condition is that it will burn itself out as and when it wants to and not before, so the dose of preds must fit the level of inflamation and not the other way round. I don't want to upset you but you will have this condition for the long haul so I recommend early acceptance of it, then you can live your life, not over doing it!! Good luck, christina 

I did.  I have changed gp's since then because I was not happy with the other one's cavaliar attitude.  It might depend on your insurance.  Sometimes you have to be referred by your gp, but it is worth investigating.  I think there is a vitamin d blood test & various other blood tests for inflammation.  Others here are probably more knowledgeable regarding this than I am.

Jilly, there may be no need to be referred to a rheumatologist with a straightforward case of PMR providing your GP is confident of being able to efficiently manage your care, ie be aware of the guidelines for the management and treatment of PMR.  However, an expert on PMR and GCA, and president of the National Organisation, PMRGCAuk, gave a presentation at our support group meeting yesterday and he commented that he would prefer everyone diagnosed with PMR to have at least one early appointment with a rheumatologist.  New guidelines are to be issued later this year and, no doubt, this recommendation will be included.

Which is all well and good - until the rheumy says "it can't be PMR because you are too young/normal bloods/or whatever" as happened to me and also now to Marie. Subsequent rheumies are all perfectly happy it is PMR in my case and I have had it for 10 years plus. So the comment to Marie of "you'd be well by now if it were PMR" is also rubbish.

Where I would agree with Marie's rheumy is that the response to pred is not typical of simple PMR and this is something that is all too common where GPs know half a story - that PMR responds to pred. Then they can't be bothered to read that it responds to a moderate dose and any patient needing more than 20mg to get a dramatic and sustained response belongs in the hands of a rheumy - and all it needs is a very quick google to find that out.

The GPs haven't got time to spend long enough with the patient let alone having "a very quick google" - Mike was just told this morning that his appointment was approaching the 7 minute time allowance (she'd requested the appointment connected to a Vit B12 result)!  She managed to palm him off with a first prescription for statins though - his cholesterol is just 4.8.  Obviously no time to tell him the important HDL and LDL levels!

My GPs in Durham used google - it usually speeded up the consultation! What I mean is that if they have patients with an illness thay don't know much about - a bit of basic knowledge would be very helpful. This site has PMR and GCA information aimed at doctors - it takes a few mins to find it and be sure you are doing it right.  

I trust Mike will not be cashing in the statin prescription? Who cares what the HDL and LDL levels are - the total is quite reasonable. Since when is vit B12 associated with cholesterol? And she could have done it by phone - much more quickly

Just to add to the mix.....My appointment that didn`t go too well on Tuesday (I posted on here) the Rheumy said, no-one taking 10mg or over (like me) should be in pain with PMR!....oh dear

What utter drivel...

I'm really not a vindictive person - but I hope one day they get PMR. Badly. Even at the top doses the expected response is 70% - that leaves 30% or possibly pretty awful pain left that doesn't respond to anything else. I have my own theories on a lot of that but nevertheless... 

Ah but they get points for prescribing statins at the moment don't they? No points for vit B12 until the government decide there should be a special target for the week for vit B12. What do points mean?? Cash for the practice. 

Ah, if only!  He should walk in our shoes.......I fear he wouldn't even survive on day!

Years ago, Eileen, my family doctor often checked her book before prescribing - whenever do you see them check either book or screen now?  Well certainly not don't in our practice.  They're ever more useless: I popped a prescription into the relevant box in reception on Monday and asked Mike to collect it whilst there today - guess what?  They haven't rec'd it!

You've guessed right, Eileen - his prescription for statins has been filed!!  his Vit B12 she called him in about is "borderline - buy a supplement OTC";  his "Vit D is low - double up on present pill, taking one twice a day".  As you say, it could all have been done over the phone.......and wouldn't have taken nearly as long as the precious 7 minutes!

Ah, I knew they got points for precribing BP pills but wasn't sure about statins.  

Just wish they got points for people who have PMR. I think they get points for diagnosing some things, there was all that fuss about fifty quid for dementia diagnoses not so long ago. I think they canned that in the end. If I had been a GP offered that for the practice, I would have checked everyone for dementia and at least ninety nine per cent would have it, at fifty pounds a throw, I may leave out the odd baby so the statistics balanced out a bit! The sad thing is I think these target inducements actually create that sort of thinking, so our time is taken up with useless questionaires on drinking, prescriptions for statins etc instead of why we are actually visiting the GP.