Rheumatology Appointment

[jaybee58]

I have finally got my rheumatology appointment through having had my telephone consultation in November last year.

Loads has happened in the last few months, have managed to get down to 12.5mg of pred on several occasions but after a few weeks have had to increase to 20 or 17.5 every time. I have also had major problems with my knee and ended up in a & e with x-rays showing I need a knee replacement. The physio who was helping me with telephone consultation exercises has managed to get my knee working again although it pops in and out every time I bend or straighten my leg but its so much better than it was.

I was told no rheumatology appointments until at least September but my physio contacted someone in the department who looked at my blood results and said I need to have my medication changed as I do not have PMR my results are pointing towards Inflammatory Arthritis.

Long and short of it is that the head rheumatology nurse looked at my bloods after I chased up the appointment, showed them to the Rheumatologist and he said I was to have an urgent appointment which has been sent through for next week.

Does anyone know what I should expect, what questions I should be asking and what I should be expecting them to ask me or will I have any other tests done at the hospital please?

[SheffieldJane]

As they have initiated this appointment, I expect they will do most of the talking. My concern would be that whoever looked at your blood test results and decided that your diagnosis of PMR was wrong is perhaps being hasty. If they are going on low inflammation levels, that result is to be expected in a patient being treated with Prednisalone.Good luck with your poor knees. I hope this gives you some priority for an op.

I would want to know what points to inflammatory arthritis in my results.

Good luck!

[PMRpro Ambassador]

It will be fairly standard first appointment - how much they do will depend on their set-up as some hospitals try to have a one-stop shop while the patient is there for the first appointment. But an inflammatory arthritis suspicion probably means they will do blood tests and probably some imaging having first done a thorough physical examination and taken a clinical history. Some tests aren't available to the average GP. It is normal for suspected inflammatory arthritis patients to get a quick appointment as the sooner the right medication is started the better the outcome.

I wonder what other tests they did and what the x-ray showed - as SJ says, a low ESR/CRP doesn't mean it isn't PMR but equally they are raised in inflammatory arthritis too and on that basis it is very difficult to tell the difference. Your difficulty reducing the pred may be the red flag - and your physio obviously thought it wasn't typical PMR either. You were obviously reducing 2.5mg at a time - it is quite possible that 13mg would have been enough to keep the symptoms under wraps but once you flare up it is often harder to reduce again.

[jaybee58 in reply to PMRpro]

They sent me copies of the blood test results which mean nothing to me but my Rheumatoid Factor was 13 with a reference level of -14, cyclic citrullinated peptide 231 reference level of -7, this had a note attached saying CCP antibodies are highly specific for TA and appear early in the disease process, CRP was 1 with a reference level of -5, Anti DNA Antibodies were 1.0 with a reference level of -9.9, everything else is well within the reference levels, but as I say they really mean nothing to me even my gp wasn't sure what they meant.

[PMRpro Ambassador in reply to jaybee58]

You can have inflammatory arthritis even with a normal range rheumatoid factor. But your anti-CCP is very raised and the vast majority of patients with raised ACCP either already have or go on to develop an inflammatory arthritis:

rheuminfo.com/common-tests/...

Someone with PMR almost certainly wouldn't have a raised anti-CCP - and the rheumy has picked that up. Were those blood tests done by the GP or at the hospital, requested by the rheumy? Can't say a GP who claims he doesn't know what those mean should be taught at least how to look them up!!!!

[jaybee58 in reply to PMRpro]

They were done at the hospital at the request of the rheumatologist.