First rheumatologist appointment

[Buttonshutton]

First apt with rheumatologist. Really disappointed cos they are experts yet started with the you are too young thing. (51). Wants me to come off one pred tablet per week (5mg) so fast taper which will hurt so I can have a scan which is not masking anything by the pred. What she is scanning for I do not know. Also she doesn't like I've never been pain free. Not many are from what I can gather. Gutted and really down and worried now. It's like back to square one. I know it makes sense to ensure being treated for the right thing. But dads in hospital on palliative care, lost my job. Not having a pity party but is there any wonder I'm not pain free

[DorsetLady PMRGCAuk volunteer]

Very disappointing, “too young” - rubbish!

But as your symptoms haven’t been controlled since beginning can see why diagnosis is being queried….even though the stress you are under could account for that.

Hopefully the scan can be done as quickly as possible, and you get a definitive diagnosis and appropriate treatment.

Please let us know outcome.

[Koalajane]

I thought that as long as pain is reduced by 70% that was acceptable

[Buttonshutton in reply to Koalajane]

Me too !

[DorsetLady PMRGCAuk volunteer in reply to Buttonshutton]

But are you/were you “at least” 70%free ….at any dose?

[Buttonshutton in reply to DorsetLady]

Yes just started to feel normal at 22.5 after a month but then the current situ with dad and losing job am in pain again this week

[DorsetLady PMRGCAuk volunteer in reply to Buttonshutton]

So are you still on 22.5mg? Or have to tried to catch the flare that your recent issues have caused.If you have to reduce as Rheumy wants than I’m afraid you’re in for a few thought weeks.

[Buttonshutton in reply to DorsetLady]

Still 22.5 amd promised will drop by 2.5mg every week for the next 6 (she worded it one tablet a week so you'll be on 12 in 6 weeks at next apt. I thought eh ? (As my tablets are five, but I cut them in half to reach 22.5) then realised she meant 2.5mg per week which still doesn't add up as I'll be on 7.5 not 12 !!

[cycli in reply to Buttonshutton]

promised? who? the rheumatologist.. Is he feeling the pain? For goodness sake please will people stop doing what they are told to do and advocate for themselves. Yes you want their help. HELP. That means they must listen to you and not dictate. If 22.5 was ok but now you have been upset and it isn't enough then why reduce and make it worse You won't be punished by not reducing, what can they do to make you reduce. You are doing it to yourself. I simply fail to understand why people do what they are told when they know it isn't good for them.

[Buttonshutton in reply to cycli]

I think I'm programmed to oh the specialists know best. But do they ? It seems there aren't any real specialists in it. This constant you are too young does my head in. I'm open to the scan to rule out anything but after that if proves to be PMR I'll insist on them working with me etc.

[cycli in reply to Buttonshutton]

good for you. Yes, by all means investigate, but if pred. relieved the pain then it's most likely working and PMR. your recent stress might have made it worse and you need to stay there or even go up. Down is just wrong at the moment. if staying at current or going up interferes with their plans tough. I think you need another conversation and quick. I'd stay where you are for a week and then see how you are. You've got 6 weeks before scan and it's worth knowing if you can get relief. If you do then plan sensibly for the scan at a better rate or just accept it's real and work on that.

[Buttonshutton in reply to cycli]

I am going to stay where I am this week for sure. I'm no use to mum if I'm in agony etc. trying to continue supporting her, making self worse in the process am I. Her maths made me think she's not all that too !! 6 weeks x - 2.5 a week wouldn't make me on 12 as she said from 22.5 It would be 7.5!! Also. She said in 6 weeks we will talk about the scan, not have it. So how long will that take on sod all pred to continue my life !!

[PMRpro Ambassador in reply to Buttonshutton]

If it is a PET-CT she wants to do and the query isn't cancer, the waits are likely to be considerable.

[Buttonshutton in reply to PMRpro]

Oh don't mention the C Word. I'm terrified as It is. Keep telling myself doesn't seem to be any urgency so not that. Been tested for myeloma by the GP

[PMRpro Ambassador in reply to Buttonshutton]

Sorry - what I meant was that if her request is for a rheumatology diangnosis, it won;t have the same priority. ?ca always gets priority (rightly enough) and that is what PET-CT has been used for mostly so far - the machines are very expensive to set up so there aren't as many as for plain CT.

The problem you have now is getting off the pred - and I assume THEN she'll request the test so you could have some weeks wait.

[Buttonshutton in reply to PMRpro]

Hi. Thank you. I've just been googling and panicking thanks for putting my mind at rest. I know. I understand the thorough let's check the diagnosis but at the same time the thought of the pain I had in the beginning .. not good thoughts. The pred has definitely helped. My GP is calling me tomorrow. A different one to Normal. Interested as to her take on it all

[Buttonshutton in reply to cycli]

Just thinking as you do at 5am. Wonder if she meant go down 1.5mg per week. 6 weeks at that is total reduction of 9mg bringing me to 13.5 (still not 12 but nearer). Thing is she didn't ask what size tablets I'm on (only have 5's) she says drop a tablet a week. Perhaps she should have said drop (.insert dose per week). I didn't think to ask whilst with her was only afterwards when realised this didn't add up. Got a call with my GP Friday. I'll ask for some smaller denominations of pred.

[cycli in reply to Buttonshutton]

good thinking. like I said, you need an urgent chat with her to resolve where you are and where you want to be with what they are demanding of you. They have to listen and adjust accordingly. patient centric is key. good luck.

[PMRpro Ambassador]

It may well be she wants to do a PET-CT which is supposedly as definitive as it gets for PMR - but any pred does get in the way.

How long have you been on pred and at what dose?

[Buttonshutton in reply to PMRpro]

Ah thank you. I wondered what kind of scan. Been on it since July. 15mg then 20mg then 22.5mg for a month. Had just started feeling almost normal with just bit of stiffness

[PMRpro Ambassador in reply to Buttonshutton]

That's a shame she wants you to reduce - hope it isn't too bad

[Buttonshutton in reply to PMRpro]

Thank you