Nurse led apts...what do they mean

After being in excruciating pain in my legs hips and shoulders for months I was finally diagnosed as having PMR, fibromyalgia and osteroarthritis in February this year. I was given 15mg Pred gradually reducing the dose until I am now on 5mg. Last wk I saw the Rheumy and he has said to keep on the 5mg for another month and then reduce by 1mg every 2wks until I am off them altogether. My next apt has just come through and it says it's a nurse led apt, does this mean I will be discharged from rheumatology for good? I have got good range of movement (according to Rheumy) as I can raise my arms above my shoulders and put them behind my head, trouble is I was able to do that on the day, this week I have been in agony and taking pain killers to numb it down somewhat. I am worried I will be back where I started this time last year if I reduce my dose and won't have a consulant to turn to. My GP didn't pick the PMR up at all and didn't even check into why my ESR's were raised, he was putting it all down to osteo in my back and just told me to take more pain relief. It was muculoskeletal that referred me to Rheumatology in the end. I know some pain can be put down to Fibro but not the movement/range. I do feel worse on the lower dose of Pred, I hate taking them but they have made it so I can live my usual life again. I'm feeling reluctant to reduce down any more and feel like upping the dose as I was much better on 7.5 and 5mg alternate days.

I've rambled a bit but I read the blogs all the time and they have helped me come to terms with this awful debilitating condition, up to getting PMR I have never needed regular meds or had been ill, it's a hard thing to live with. I'm 54 by the way so youngish by PMR standards, I know younger people have commented on this site.

Thanks in advance for any comments/advice

2 Replies

  • The first query regarding nurse-led appointments is because so many GPs and hospital departments now have nurse-practitioners for specific conditions, e.g. my surgery has them both for asthma and diabetics. The nurses have additional qualifications in their chosen field and the routine clinics for patients are run by them with a referral to a doctor if the nurse thinks it necessary. The same with hospital departments, many have a rheumatology nurse who deals with routine appointments.

    Secondly, if your Rheumatologist is proposing to stop the Prednisolone after 5 months and your doctor was not interested in checking why you had raised inflammation markers I would suggest you start again with a different doctor and rheumy. Quite right, some of the pain will be due to Fibro as steroids do not help it at all, but in my experience it doesn't cause any joint problems. I think that you have been unlucky in finding a rheumy (not to mention doctor) who hasn't kept up-to-date with medicine - it seems to me that you have been reduced far too quickly and probably need to start again.

    I have both Fibro and PMR and my rheumy looks after both conditions (Fibro is diagnosed by rheumys more often than not) and I am being treated with specific drugs to help with the pain.

    I think you need to find the guidelines on this site and take them to a doctor (can you see a different one in your practice?) and ask for a further referral. Quite apart from anything else, your sight is being put at risk, there can be other problems associated with abruptly stopping pred and your quality of life is compromised.

  • Hello worried about PMR

    I agree with polkadot, you need to download and print the British Society of Rheumatologists Guidelines for the Management of PMR, take them to a different Dr and ask for referral to another rheumy for a second opinion.

    Also, if it was me I would immediately increase the steroid dose back up to 7.5 as that is where you said you felt comfortable - if you leave it too long, the inflammation could really take hold again in which case you would need to increase even higher. I hope you feel better soon.

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