Do we get annual reviews as PMR patients?

[HalleysComet]

I get an annual review with a practice nurse for Blood Pressure and another one for Asthma. I have not been called for a PMR review. Is it a condition that is not reviewed? I would find it beneficial to have a chat with a medic, just to ask about bone health and possible return of adrenal function, but I don’t want to bother my surgery if it isn’t absolutely necessary as appointments are very hard to come by.

[SnazzyD]

It depends on your GP. In my years working for GP’s I never saw PMR on the annual roundup categories that we had to code. Generally, if the GP doesn’t get money for hitting a target for a particular condition, for example cardiovascular disease, they don’t do and annual check for it. I’ve annual medication reviews but that tended to be for those who were lots of meds but who knows what happens since the pandemic? To be fair, where does one draw the line for which conditions are monitored annually?

Once you’re out of the high dose early days, it’s a case of you asking for an appointment if you have a problem. If you think you are struggling with low adrenal function and you are well under 5mg, you could ask for a cortisol or Synacthen test. For bone health you could ask for a DEXA if it’s has been more than 2-3 years since your last. There isn’t much they can do by looking at you. As for advice on these things, that will depend on the individual GP as to how clued up they are and that can be variable so self education is really important. I would say, don’t think you are not worthy of an appointment, but go in knowing what you want if possible.

[MrsPractical in reply to SnazzyD]

Do you have a review of your prescriptions? Mine have to be reviewed at intervals. At my surgery this is done by the pharmacist at the surgery. I find he is great. He ordered dexa scan for me when I said I wasn’t happy with taking Alendronic acid. I have found he is much more knowledgeable about PMR and steroids than the doctors. Another story is that I still haven’t had full results of dexa scan ordered Dec last year and done in March!

[HalleysComet in reply to MrsPractical]

I have annual reviews of asthma meds and BP meds, but have had no review of Pred, which is why I was asking.

[MrsPractical in reply to HalleysComet]

Doesn’t it say on your repeat prescription when it should be reviewed? All of my meds show a date for review.

[HalleysComet in reply to MrsPractical]

Aha! I have just spotted the very thing! It says review 1st September 2023. I shall wait to see if the GP gets in touch.

Thank you so much, Mrs Practical. You are well-named.

[SnazzyD in reply to MrsPractical]

No I never had a review. I saw a rheumatologist once or twice a year, even when I was on high doses. Any review with the GP was instigated by me.

[Koalajane]

I think I had one review before Covid and that was with one of the nurses who is also my diabetic nurse

[DorsetLady PMRGCAuk volunteer]

The problem is PMR is not considered as a chronic illness like cardio/diabetes etc-some would disagree -so isn’t included in the annual reviews.

Pre Covid (remember those halcyon days) my GCA was monitored monthly initially -then down to 3 monthly as I reduced…

.. and to be brutally honest not sure all GPs are au fait with bone health nor adrenal issues associated with PMR/Pred.

[HalleysComet in reply to DorsetLady]

I recently asked on line for a cortisol test but was refused by a GP on the practice list that I have never met or spoken to. He refused because I wasn’t complaining of symptoms that might indicate adrenal problems .

I thought it strange because nobody has asked me if I had any of these various symptoms before saying I didn’t have them.

I do worry about the GP service having broken.

[DorsetLady PMRGCAuk volunteer in reply to HalleysComet]

Totally agree with your last sentence.... and just because you don't have symptoms of a/i doesn't mean everything is necessarily tickety-boo...

You can buy a basic cortisol test online if you are concerned.. shouldn't have to, but it appears it is becoming more of a DIY service.

[SnazzyD in reply to DorsetLady]

Yes, it rather supposes the patient has the knowledge that their vague symptoms are due to adrenal function and not some other cause like the weather, what they last ate, stress, poor sleep etc.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

True…and certainly not always easy to work out what’s what at the best of times.

[PMRpro Ambassador in reply to HalleysComet]

Shouldn't need symptoms of adrenal problems - you are a long term corticosteroid patient. Duh ...

[PMRnewbie2017 in reply to HalleysComet]

I had a long overdue medication review last week after waiting since April! I asked about getting a basal cortisol test because over the previous 2 years whilst getting to 2.5mg I had experienced what I considered to be symptoms of AI. He grilled me, asked how I dealt with it and said I should have gone to A&E and they would have done a blood test straight away because it was a medical emergency. Oh yeh?. There was no record of my ?AI on my GP record so he was miffed. Following a robust conversation he backed down and agreed to me having a test. I'm lucky because I'm a pharmacist (Rtd) so I can usually achieve the result I'm looking for but it makes me so cross that so many patients are not getting the service they deserve from doctors of all grades.

[PMRpro Ambassador in reply to PMRnewbie2017]

For goodness sake - he doesn't appear to know a lot about AI does he! And he should be doing tests now and again anyway - so where's the problem adding one to the list? Except then it would come out of his budget. But the level that is most helpful is between 9am and 1pm - no way you can control THAT at the ED is there!

[PMRnewbie2017 in reply to PMRpro]

Why do you think I avoid Drs like the plague. Consultants are bad enough but GP's today are hopeless. If they haven't got the NICE guidelines open on their PC they're lost! Problem for PLU is we are fairly expert in this PMR stuff by now so it's hard for a GP, so I do sympathise. ....NOT!

[PMRpro Ambassador in reply to PMRnewbie2017]

Tell you - more evidence I should stay here as long as I can ...