What should I ask Rheumy

[LMali]

Hi,

I have been on the forum since I was first diagnosed in 2020. The lowest I tapered to was 3.5 mg in 2022. I flared and went up and down and am currently on 6 mg and feeling good. Have been on 6 mg for ages as I don't want to taper and experience that pain again. GP has not urged me to taper. I have my first ever appointment with a rheumatologist next week, at Ipswich Hospital. I am not really sure what to expect or what I should ask them. I know in an ideal world I would taper off steroids but I don't feel worried about being at 6 mg (maybe I should) as it enables me to live a normal life. Will the rheumy do tests? Should I ask for tests? I did have a dexa scan a couple of years ago which indicated osteopoenia (?) but nothing alarming, given I am a 59 year old female. I was taking AA but stopped after a couple of years. I do take Calci-D and Tibolone. GP said that should look after my bones. I swim loads and do the odd stretch or yoga/pilates class. Any advice to make the most of my appointment with Rheumy?

[PMRpro Ambassador]

First of all - listen and assess THEM, Are they willing to look at you (that tells you a lot) and allow you to say things without interuption? It's impossible to tell what thair opinion will be - are they of the school of thought that PMR only lasts 2 years and so, according to them, you don't have PMR any more or you are just being lazy about tapering or is it a longwinded version os PMR? But are they a doctor who is interested in the patient's experience and what they need to be able to do? If they aren't then you may struggle to be heard by them.

That will inform the rest of their actions really - if they think it is PMR and the GP got it right (some 50% don't it has to be said!) they should encourage you to taper VERY slowly, 1/2mg at a time now, to see if you CAN get lower. See if they do. The next step might be to add in MTX and see if that gets you lower - you have to try it to find out and it is the main reason for a GP referring a patient as they can't initiate DMARDs, you need a specialist to do that.

If they are sceptical about the PMR diagnosis, then they may do blood and imaging tests to see if they can find anything the GP hasn't looked for.

[LMali in reply to PMRpro]

Thank you PMRpro, helpful advice. I was referred such a long time ago, when I was flaring, that it now feels a bit strange seeing a consultant finally. As I am not currently suffering as such, I am just on (probably) too much Pred!

[tangocharlie]

Think about what YOUR objective is for this appointment, not theirs. The key thing you say is I know in an ideal world I would taper off steroids but I don't feel worried about being at 6 mg (maybe I should) as it enables me to live a normal life.

So I'm guessing your questions are about how you can try and taper furtehr but not bring on a flare which as Pro says is about trying it very slowly and if it doesn't work sorting out the flare and getting stable again. 6 is already a relatively low dose. Rheumatolgists often suggest adding in a steroid sparer such as Methotrexate so you may be advised to do that. But you need to weigh up the pros and cons of adding another complication in for the sake of possibly saving a mg or 2 of Pred . A good mnemonic is BRAN when deciding whether to take a med or treatment - what are the Benefits, Risks (side effects etc) Alternitives and what happens if you do Nothing.

The rheumie might also be unsure whether you have PMR given your age as it can be similar to other things and not all rehumies are clued up about how to diagnise and treat PMR as it is relatively rare compared to say arthritis that they see more often. So if they say they don't think you have PMR ask them why they say that and what tests they recommend.

You also want to know how you can contact them if you have a query or problems reducing between appointments.

These are just ideas - write down any questions you have in your mind and take the bit of paper with you, and ideally take someone with you

[LMali in reply to tangocharlie]

Thank you - good advice - I will take a notebook rather than another person! And ask how I can contact them later - very good advice!!

[tangocharlie in reply to LMali]

My rheumie says always take a man with you as they're the only people who get listened to and I'm sure there's more than a grain of truth in that. I always phrase my questions in simple Plain english eg how can we (we rather than I) know for sure I haven't got cancer/PMR? What do I do if something goes wrong? Who else can help me? If it isn't PMR what is it? Rudyard Kipling's 6 serving men, How Who What Why When Where?

[PMRpro Ambassador in reply to tangocharlie]

I trust she listens to her female patients!!! And my gentleman rheumy appears to listen to me ...

[tangocharlie in reply to PMRpro]

Of course she does, but as we know she's quite a rarity compared to some of the 'old skool' consultants that I've come across eg the Immunologists. You and I hae been very lucky with our rheumies but we hear plenty of other people's horror stories on here

[PMRpro Ambassador in reply to tangocharlie]

Well yes - btw here's an article I think you will love:

australianprescriber.tg.org....

Read the paragraph below the x-ray image - scary or what?

[LMali]

OMG I

[LMali]

I meant to say OMG, as in I am not going to take a man with me to pander to any gender stereotypes of intelligence.

[PMRpro Ambassador in reply to LMali]

Could lead to it being your loss though!!! Don't think it is intelligence, not sure what it is other than being female ...

I am quite happy to play a system when I know how ...

[tangocharlie in reply to LMali]

Unconscious or even conscious sexism sadly exists though, many books have been written on it eg Sex matters, in all sectors of society including healthcare

[PMRpro Ambassador]

I know - but my point was also that x-ray looks like mine-ish, mine is more of a wedge. I'd had a spinal x-ray at the time the severe spinal pain started but there is nothing to be seen - I've seen them both. Christian does regular x-rays - you had to fight for yours. But it meant mine was spotted.

That article is 2016 - it isn't as if it is new info. I've been going on the standard gumpff - definitely see it differently now.

[tangocharlie in reply to PMRpro]

Interesting. I had an x-ray of just the base of my spine when the pains first started in Jan 23 which was clear, before the excruciating pains from fractures that happened higher up in the T and L areas about 4 months later. Maybe there was a delay - kind of warning pains before they fully crumbled?

[tangocharlie in reply to PMRpro]

Oops we've diverted the post which was about preparing for a rheumie visit. I've noted and saved your link so we could delete these replies and I will put them in a new thread about osteoporosis soon as it's something we do all need to know about

[tangocharlie]

Done but it only deleted one bit

[PMRpro Ambassador in reply to tangocharlie]

Delete the rest then

[DorsetLady PMRGCAuk volunteer]

This is in FAQs - if it’s of any use -

healthunlocked.com/pmrgcauk.....

[LMali in reply to DorsetLady]

Thank you that is really helpful. The referral makes sense on those criteria, ie. I was only 55 when I got the diagnosis, I still have it 4 years later, difficulty tapering. So I am looking to the rheumy to consider whether it is in fact PMR and best way to taper. Should I assume that they have all my notes and test results from the GP?

[PMRpro Ambassador in reply to LMali]

They should have all the relevant info. What sort of tests do you mean?

[LMali in reply to PMRpro]

Well, when I was first diagnosed I used to go for monthly blood tests to check the inflammatory markers. Also I have had a dexa scan. The GP recommendations for dealing with flares might be relevant for the rheumatologist to be aware of? I just wasn't sure if GP makes referral and attaches any relevant information. I would if I was a GP . . .

[PMRpro Ambassador in reply to LMali]

Depends on the local system - some GPs will use the labs in the local hospital where the rheumy is so they should both have access to the lab results. But many rheumies are not particularly interested in what the GP did, treat it with a degree of disdain and prefer to start from scratch.

Mind you - don't pin all your hopes on a rheumy knowing the best way to taper!! Members of this forum can write books about that ...

[LMali in reply to PMRpro]

I guess that is fair enough. If they are expert and doing their job well, they would want to do a thorough examination and maybe do their own tests, take a history etc etc. I am expecting great things!!!

[PMRpro Ambassador in reply to LMali]

Wouldn't hold my breath there!!!

[Nutsandseeds]

my local hospital is Ipswich also. 🙂. I was diagnosed last summer but have only seen GP so far. Hope the rheumy is helpful x