1st consultant appointment query PMR! not sure next step?

[toniaell]

I know Ive read similar stories so many times on here but Im so unsure what to do next!

Had my 1st consultant (emergency - referred July as doctor wanted to make sure I was checked out for GCA as well as get confirmation of PMR). appointment today and she wants to rule out RA, even though she accepts I have most of the pmr symptoms. However when she examined me I was tender in a lot of my joints. Had more blood tests and xrays and she wants me down to 5mg pred in 6 months time so she can see what's going on with my joints etc. My blood tests never showed a raised level but I know that pmr is still possible without that and she accepted that too. Nervous now about having to deal with pain again as I reduce pred. Plus I shouldn't be at 5mg if I taper 1 mg a month! Not sure what to do. Do I go private and get a 2nd opinion ? My doctor is pretty good so wondering if I go back to her and discuss? Any thoughts? Maybe worth noting that I was diagnosed with osteo arthritis in spine, hands and feet about 3 year's ago

[PMRpro Ambassador]

It looks as if our email notifications are not working again! Sorry you have waited so long for a reply.

If your joints are painful I think your rheumy is actually being quite reasonable about wanting to see you without pred - RA also responds to pred and PMR doesn't really affect joints, just the soft tissue around joints which isn't quite the same. GPs are notoriously bad at getting PMR diagnoses right - some studies suggest as many as 2/3 of patients told they have PMR don't!

I think discussing it with your GP is probably a good idea.

[toniaell in reply to PMRpro]

Thanks for your reply. I was so upset yesterday as im dreading being back in so much pain etc. but after sleeping on it i feel the same as what you say. Id rather get the right diagnoses now than find out ive been on the wrong meds for years. Thank you for taking the time to respond.

[PMRpro Ambassador in reply to toniaell]

We always do and during the day immediately - I'm so sorry you had to wait so long.

[Suffererc in reply to PMRpro]

my GP days I don’t have PMR anymore after 4.5 years. But didn’t say what I have as an alternative. A flare isn’t PMR based. So think they get it wrong both ways

[PMRpro Ambassador in reply to Suffererc]

Your GP may well be wrong on that count - the median duration of pred management for PMR is just uner 6 years according to one top expert in PMR. And the top expert in the UK is on a crusade to break the "PMR lasts 2 years" myth. It lasts as long as it lasts and a lot of people need pred management, albeit at a low dose, for more than 5 years. And there is no evidence in many of these patients that it is anything other than a version of the PMR we discuss here, no other rheumatological disorder.

[Predsharer in reply to PMRpro]

I’m quite shocked to read that so many PMR diagnosis are wrong. Can it really be that all this number of people are taking Pred when they don’t need to?

[PMRpro Ambassador in reply to Predsharer]

Depends how you look at it doesn't it - if it is relieving symptoms that were making life unbearable can you say they don't need to? If it isn't PMR and short lived they will get off pred soon - which may be where the 2 year figures come from. Pred is used to manage other rheumatic conditions too and most autoimmune conditions can only be dealt with symptomatically and pred often works better than the other options and almost always used to manage flares.

Most rheumies would say they need to see all ?PMR cases - in which case, they need to make it easier/sooner. That is up to them.