Consultants

[Seanfleming25]

Hi can I ask who people see for their condition please?

[DorsetLady PMRGCAuk volunteer]

In the UK it’s primarily a rheumatologist for PMR and maybe if there are eye issues in GCA an ophthalmologist will/may be involved. As people get lower on Pred, they may also see an endocrinologist if issues with adrenals .

In the US, it seems to be a whole raft of different consultants.

Edit - As said, many in UK with PMR only ever see their GP, but one of the leading lights in the PMR/GCA field said in a podcast that every patient should see a rheumatologist at least once to ensure of correct diagnosis. However that was pre Covid, so not so easy nowadays.. and your hearing is Consultants.

[PMRpro Ambassador]

In the UK a high proportion of GPs, if a consultant is involved then it is almost always a rheumatologist in the UK. Other countries have a variety including neurologists but why is not entirely clear,

[Koalajane]

I have been looked after by my GP and never referred to a rheumatologist

[HalleysComet in reply to Koalajane]

Neither have I.

[Poshdog in reply to HalleysComet]

Nor me.

[ImC_ in reply to Poshdog]

me neither!

[Retallack]

GP all the way for me over 4 years . I had 2 due to a house move and fortunately they both understood PMR and let me do my own thing with dosing, just checking occasionally that I was ok.

[alangg]

My GP was fantastic; she prescribed Pred in different sized doses according to a spreadsheet that I had drawn up using a DSNS tapering plan (and she took a copy of the spreadsheet!). I had no desire to sede anyone else as the Pred was working and I felt so much better. Probably different if yout GP isn't as brave or as confident.

She referred me to a Rheumatologist anyway as per the GP guidance but I was rejected with the note 'textbook case, responding to treatment, no need to see him'. Having read some stories about Rheumies on this forum, I'm quite glad!

[Pixix]

GP all the way for me! The consultants I’ve seen have been of no use, & never tried to re-diagnose, just tried to get me off steroids as soon as possible! I don’t think any consultant will offer as much good help, guidance & knowledge as this Forumgives to people.

[krillemy]

In Denmark it is mainly the GP as well, but if there is anything at all that is a little stange, like fx young age (we alle are 😂)or no high CPR (they do not take ESR), then they refer to a Rheumatologist

[Birder21]

I saw GP first then had a private appointment with a Rheumatologist (wait was 6 months on NHS!) and am now monitored by my surgery - different GP every time! but they all seem ok to let me decide my level of Pred now.

[Shadowboxes]

GP although when I was diagnosed over the phone back in March it was a paramedic practitioner. Never seen a Doctor & only spoke to him twice after 3 weeks on Pred as a follow up.

Left to deal with it & asked to email him when I taper now on 7.5mg.

Without this site I would be left in the dark & struggling but feel I’m in control & everything is going in the right direction 🤞

[PMRpro Ambassador in reply to Shadowboxes]

That really isn't acceptable - at any level.

[ackagee]

My GP exclusively. While he has a few PMR / GCA patients now I must have been one of my GP's very early patients when he diagnosed me with PMR back in September 2017 as, once I had found this excellent PMRGCAuk website and Kate Gilbert's book had arrived from Amazon, he reckoned I knew more about PMR than he did... He is happy with my self monitoring of my PMR & GCA: I have kept a log on Excel recording my daily Pred consumption, where I am on DorsetLady's DSNS taper, my blood test results - I have blood tests every 8 weeks - my comments on how I have been feeling etc. I have never been referred to a Rheumatologist although I see on Google we do have two here in our local Hospital.

[Angelsmummy]

Rheumatologist and eye clinic right from the get go.Only seen dr a couple of times for talks about reducing MY WAY .Guess I am lucky here in East Anglia.x🌼😜