First Rheumy Appointment Coming Up

Having been reading posts on this site avidly for past few months and it is amazing what I have learnt. I have stopped taking my Alendronic Acid and Omezaprole and let my GP know. He sent me for DEXA scan which has a 46 week waiting list in Edinburgh! I got mine within three weeks as I think they were concerned I was not taking a biophosphate. Fortunately all very good with bones. Now got first rheumy appointment in two weeks and I want to go prepared. Should I have current bloods done? Last done end of September when markers were raised. My highest ESR was 94 in March but now back in single figures. I've adopted the slow reduction method since reading about it here as I struggled with a flare in September. Between 17 and 16mg at moment. Had a busy weekend walking and feeling bit tender round shoulders so hoping its exercise as opposed to any flaring!

Is there anything I should be asking my rheumy about or that I should watch out for?

I realise its a bit of a vague question but want to feel confident and be happy to stand my ground!

Thanks.

8 Replies

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  • Keep a diary till you see him/her. Note the dose you are taking daily, how you feel each day, what symptoms appear (if they do) what you find difficult to do, etc. etc. Then make a note of any points/patterns/questions which might appear - you get the picture.

    You can either give the Rheumy the diary to read (which is what I do) or you can ask the questions which arise from it.

    Add in, or make a separate note, of anything you may have learnt or adopted which arise from this forum.

    Yes, it's a bit time consuming, but only for a short while and it does give some confidence in asking the questions!

  • Thanks for advice. I'm already keeping a diary but will be more detailed over next few weeks until I see him.

  • PDC's advice is excellent - I can't help as I never see a rheumy! just my lovely GP who leaves it all to me anyway...

    However - don't be surprised if the rheumy gets iffy about the dose you are on and not having reduced faster! They may not - but a lot would. So make notes about the flare and how the slow reduction helps.

  • Thanks PMRpro. Since reading the posts on here I've become very defensive of the slow reduction method and my GP has accepted this. I think my GP is pleased I'm taking some responsibility and doing my own investigations as he agrees I'm not at all typical of his usual PMR patients and am not responding in the way he expected.

  • My GP declined to send me for a dexascan but because I had been taking these pills for three years and knew that they may not be of benefit beyond three years, I stopped taking the ibandronic acid I was taking and when I told the rheumy about this she order a scan and my bones are now fine. I definitely had needed it as the last in a series of scans I had been having as part of an ongoing showed an accelerated decline in my bone density which until then had been above average for my age, despite doubling my exercise regime upon being diagnosed with Parkinsons, and the likely culprit was the steroids I was on.

    I had shopped around for a private scan and the prices varied wildly, the cheapest unexpectedly being at a London clinic Presumably the cost to the GP fluctuates wildly also?

  • "Presumably the cost to the GP fluctuates wildly also?"

    No, I don't think so - there are standard charges within the NHS and it is certainly far less than some of those private ones! Southampton offers their scanner privately for £55 for a scan for example:

    uhs.nhs.uk/OurServices/Musc...

    and my husband used to run the NHS department that provided dexascans for the local area. I think he told me the cost they'd worked out 10 years ago was IRO £40 for the NHS.

    It has, however, been disgustingly politicised over recent years. He knew it needed replacing, it was quite old, and he had finance on offer from a bone charity to cover the entire capital cost. He was refused permission to use it.

    I live in northern Italy. My GP wrote the prescription on Tuesday, I called on Wednesday, had it done on Friday, knew the results immediately and got the written results 10 days later. It cost me 36 euros and I had to travel 50 miles (we have two for the region I believe) so we had a day out. I wouldn't get a free one - we have co-pays for almost everything but I doubt it works out more than prescription fees in the UK for most people (unless you have a chronic illness/low income exemption and you don't get anything free as a pensioner!).

  • Thanks for the information. I am not entirely sure of what "politicised" with the regards to the NHS means. Could you elaborate please?

  • Despite money being available for something - someone had their own agenda and refused permission. Sorry - can't explain it better than that. The entire NHS debate is now political - privatisation by the back door. But I'd really rather not get into that too deeply here.

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