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[Kingscorer]

I was diagnosed with PMR late November with inflammation blood level of 74. Started on 15mg prednisolone daily until 3rd January when reduced to 10mg. Blood inflammation level had dropped to 41. 28th January advised to cut back to 9mg but now 9 days later symptoms are back, sore muscles, unable to lift arms to brush hair etc. Am being supervised by an Advanced Nurse Practitioner. Difficult to get advice from surgery. Any advice from other members please?

[Kingscorer]

My mistake diagnosis was late October not November 2024.

[PMRpro Ambassador]

Hi and welcome! Sorry to hear your ANP isn't quite as well up in managing PMR as she might be. 5mg drops may be fine in other uses of pred but it is far too big at this stage.

You aren't ready for 9mg yet - and to be honest, I don't think you were ready for 10mg in a single drop with an ESR that is still well above the normal range. It is much better to reduce from 15 to 12,5 and then 10mg with at least 3 or 4 weeks between drops. And then, at 10mg, a bit of a pause to see what the ESR is doing isn't going to cause a problem and may save trouble later on.

If you can, I would use the flare protocol - go back to 15mg for up to a week until you feel fine and then either risk dropping to 10mg again and see if that was OK - if you were OK before, you may be now - or if you feel you were at all wobbly at 10mg, go via 12,5mg. And be sure you feel good and that the ESR is lower and stable before trying another reduction, whichever dose you choose. I say if you can because you may not have enough leeway with your stocks of pred.

All the suggested tapering programmes in PMR that I know of say 15/12,5/10 - so it would be interesting to know if the ANP has read any of the guidelines and how much experience they have with PMR.

DorsetLady will be along and provide her welcome post - and you can start to learn more about PMR for yourself.

[Kingscorer in reply to PMRpro]

I don’t think the ANP has much experience. When I saw her for my initial appointment and told her what I thought the diagnosis was (my dad had PMR) she said she would look up which blood tests I needed to diagnose. Then the ESR was very raised so I saw a GP who started the steroids at 15mg and made some other medication changes but then back to the ANP for follow up. Not very pleased with care in all honesty.

[PMRpro Ambassador in reply to Kingscorer]

I find it bad enough that years ago, rheumies discarded PMR as not worthy of their notice and left it to GPs - now they are complaining that GPs get the diagnosis wrong and they see patients who have been on pred for years unnecessarily. And now, GPs are making a maybe dodgy diagnosis and handing it over to an inexperienced ANP without monitoring you closely in the first 6 months to get an impression of whether it really IS PMR. There are a lot on the forum who were dx'd over the phone during Covid and since and have NEVER seen a doctor!!! Which I think is appalling.

Anyway - you are here now and we have lots of info in the FAQs and at the end of a post to manage your PMR better yourself!

[DorsetLady PMRGCAuk volunteer]

hi and welcome…

Been out to Pilates, jut back, so as suggested by PMRpro my intro post plus an extra one tapering suggestions..

the intro post is quite long, but do read it through and also look at the links in it…and suggest you save links so you have easy access in future.

Anything you are concerned about, no matter how small it may, be please ask… now you’ve found us.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Kingscorer]

Yes it will be very helpful to have this input. Thank you for your replies. I’m learning a lot.

[Groggrim in reply to Kingscorer]

Hello, I sympathise. I was diagnosed with PMR last August by an enthusiastic young GP registrar and given prednisolone based on ESR results coming in marked as abnormal but were, in fact, only just up at 28. My own GP was not sure of the diagnosis but by then I was on the meds and am still tapering off them.My point is that, in my opinion, neither a GP registrar nor an ANP has enough experience to diagnose/ advise a condition such as PMR with our checking with their supervising clinician.

I hope all goes well for you now you have access to the information available here.

[Kingscorer in reply to Groggrim]

Thank you for your reply. I do hope you get to the cause of your problems.

[August7]

Welcome Kingscorer You have the best of advice from PMPro Ambassador and Dorset Lady. I hope you soon find some relief from your symptoms. Sending all good wishes.