Finally, a consultant who understands!

Finally, I've seen a consultant who seems to understand this wretched illness and the difficulty of reducing steroids without causing a flare up. He knew what I was talking about when I said I was trying to follow the Kirwan reduction plan, deplored the fact that not much research is being done on PMR/GCA and most important for me, he confirmed the diagnosis of GCA which my GPs have been havering about since July - despite putting me on 30mg pred to hedge their bets. I've had bloods taken and he's seeing me again when results are through. It's such a relief to feel that I'm not out in the wilderness anymore, trying to organise my own care with my only -albeit invaluable - support and information coming from this forum for which I am so grateful.

Interesting that he is not a rheumatologist but a neurologist!

9 Replies

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  • Glad you are getting somewhere at last and that you have a follow-on plan. Do let us know what happens when you see the neuro next.

  • In Germany at least you would be as likely to be seen by a neurologist or ophthalmologist as a rheumatologist - and I still wonder why the UK is fixated on us being under the rheumies where you are a bit lost amongst the hundreds of people disabled by an arthritis/rheumatism.

    It must be the week for doctors who get it though!!!!

  • What is the Kirwan reduction plan?

  • It's a plan devised by Professor Kirwan at Bristol. For PMR it starts at 15mg Prednisolone for 6 weeks, 12.5 next six weeks , 10 mg for 1 year then 1mg reduction per month thereafter.

    For GCA 60mg for 4 weeks, 50 for 4 weeks, 40 for four weeks, 30 for four weeks, 20 for four weeks then as PMR for 2 years. This is to reduce the risk of flares and relapses and as someone who has been up and down the prednisolone escalator for nearly 15 years since my first PMR diagnosis I'm willing to try it if I don't have a doctor urging me to reduce more quickly. I'm currently on 20mg and so far so good.

    PMRpro also has a slow reduction plan which you can find through the references on this site . This works by starting on one day of a new dose followed by six days of old dose increasing the new and decreasing the old until you reach one day old six days new dose. Look under prednisolone tapering for the details . Hope this is helpful.

  • Hi, I think thi s what I have started with pains n my arms, shoulder, neck....my doctor got me on Naproxen at moment but doesn't seem to be helping much...... my question is Has any of you had ultra scans to diagnose this plz or any form of scan thankyou maggie

  • Diagnosis is generally on clinical history (symptoms) and blood tests (though they can be normal). A final test is trialling the patient on 15mg/day of prednisolone where an improvement of 70% in all symptoms should be seen within a few days and they return to the same level on stopping the pred. It is possible to do special forms of CT scans with contrast which is taken up more by areas of inflammation - but they are expensive and only available in certain centres so there is a waiting list and they are usually used for more complex cases. It is also possible to identify inflammation in some arteries using ultrasound but again the number of places where that is available is also limited due to lack of trained staff.

    The fact naproxen is doing nothing suggests that it could be PMR - it tends not to respond to ordinary painkillers.

    If your GP is interested but unwilling to try pred you could show him this paper:

    rcpe.ac.uk/sites/default/fi...

    which is written by top PMR rheumatologists to assist GPs in making the diagnosis and managing patients with PMR.

  • Been back to docs again tonight...as had to stop taking Naproxen upsetting my stomach. ? So now he gave me ibrufen gel...so have to see how it goes I supose thanks for reply

  • Find another GP. There must be another in the practice. if there isn't - change practice.

  • Yes, I agree with PMRpro - see another doctor in the practice!

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