Am I the only one never to have seen a "rheumy"?

[HamishPMR]

My GP diagnosed PMR but confirmed with a blood test. Definite diagnosis within 24 hours. He follows the NICE recommended route of a course of prednisolone starting at 15mg daily with a define pattern of tapering, again as recommended by NICE. Under what circumstances do I need a rheumatologist?

[Hidden]

Morning Hamish

If your GP can make a diagnosis & you don’t run into any difficulties then a Referral is not necessary.

I was on the ‘young’ side & was seeing a Pain Management Specialist who diagnosed me & referred me to a Rheumatologist.

Are you having any issues or was it a general question?

Kind Regards

MrsN

[HamishPMR in reply to Hidden]

Sorry, it was just a general question. I guess I, so far, have been lucky. 18 months in and I am on 3.5mg daily.

[Hidden in reply to HamishPMR]

That’s great! Are you tapering now by 0.5mg drops?

[HamishPMR in reply to Hidden]

Oh yes and if I get below 2mg I shall do down 0.25mg at a time. If you have a good quality made tablet one can get a fairly accurate dose.

[Hidden in reply to HamishPMR]

Best of Luck 🍀

[Longtimer in reply to HamishPMR]

Do you think the pred varies in qua!ity, I have often wondered when given a different make?

[Koalajane]

I have never seen a rheumatologist either. Doesn’t tend to happen in UK unless you have problems. I am down to 4.5 mg after 2 and a half years

[Longtimer in reply to Koalajane]

Very good,

Must say in my experience of seeing 2 Rheumatologists they made me worse, now manage with GP, think it's pot luck if they are knowledgeable on PMR.....you only have to read the experiences on here...such a shame...😕

[scats]

I was wondering the same thing until earlier this year. Then after my third flare and an inability to get below 10mg I was referred for the first time. I suppose it depends on your journey.

[Chrob]

Never seen a rheumatologist ,nearly 3 years in . Flare after dropping to 2.5 . GP advised hit it hard then slowly slowly drop eg reduce when able . Sounds good to me .

[PMRpro Ambassador]

In the UK it is mainly GPs who manage straightforward PMR. Atypical cases should be referred - young age, with possible GCA symptoms, who do not respond well to moderate dose pred (up to 25mg) or who later have great difficulty in reducing with a sensible tapering plan.

There is no DEFINITIVE diagnosis of PMR - it is a diagnosis of exclusion based on a level of suspicion considering symptoms, blood results and response to pred. Even GCA is only definitive if there is a positive TAB - which is found in less than half of cases despite very convincing symptoms. The blood markers may remain within normal range in up to 1 in 5 of patients (even though they may be raised for them personally).

Personally I think the NICE declarations are unhelpful - particularly when doctors treat them as gospel. But that applies to quite a few NICE statements. They are fine when they work - as they seem to have for you - but they should be regarded as flexible when that is required.

[SheffieldJane]

As far as I know, GP’s often treat straightforward PMR. If you are content that your PMR is being treated competently, then that’s fine. It is different with GCA, this expression of the disease will involve specialist input. I was referred to a Rheumatologist before I knew this. My GP had taken a long time to diagnose me though, maybe the knowledge wasn’t there.

[Charlie1boy]

I've never been referred to, or seen, a rheumatologist. In fact I've only visited my GP on one occasion since diagnosis four and a half years ago. Now down to 2 mg daily, but I've got no other complications.

Good luck

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

Whilst I don't see my GP frequently now, once in nearly 5 years is a bit low! They should be monitoring some things every year at least and preferably more often!!

[Charlie1boy in reply to PMRpro]

I can hardly disagree with what you say, especially as I was diagnosed with prostate cancer in July 2016, and I did see him then, but mainly it was the urologist I saw.

I'm of the age when we grew up not wanting to bother GPs unless it really was urgent!

For PMR, it has been the forum which has answered all my questions!

With best wishes

Paddy

[piglette]

The majority of people with PMR are treated in primary care only, by their GP. People seem to be referred when their GP knows nothing about PMR or is not sure about diagnosing or there is something not run of the mill. I went to my GP who said I had a virus. This went on for over three months, in the end I went to see a rheumatologist privately.