This is interesting. Refreshing to find someone acknowledging pred is the only thing and the other stuff they peddle us really for unusual persistent cases needing high doses of pred etc
youtu.be/QsHIle6u0BY not sure if this is pasting properly. I’ll check it later just at work !
Yes it’s working fine, thank you.
But still talking about 24months or less duration for majority -and then mentioning the number of flares.
I can never work out why so many Rheumies don’t put 2&2 together and realise that for many it’s too fast a reduction because PMR lasts longer than 2years.
Ditto, ditto, ditto ,,,
😊
sorry. Been at work all day. Then tea, house stuff. Knackered ! Yes I noticed the time scales. If my taper works it will be 3.5 years amd know many are longer
Very interesting, thank you!
She can have 6 or 7 out of 10 which puts her ahead of a lot of rheumies! BUT that 9-24 months bit - oh dear oh dear! Apart from that - useful and she isn't patronising,
The sad thing is these rheumatologists leave a lot of people in excrucuating pain because they are not fully conversant with PMR.
I spent 5 years in pain because a GP didn't take it seriously - just because the markers were "normal range" but not normal for me. At no point in that 5 years did pretty text book PMR symptoms go away - so I have no sympathy with the mantra it lasts a maximum of 2 years. OA in a knee was mentioned - 13 years later, no sign of OA on an x-ray of that joint. I've had a PET-CT, am under a world name in the field. HE hasn't suggested it is anything else.
The dreadful thing is they are making these errors in life changing situations. They don’t seem to learn from their mistakes either.
That is one of things I find so good about Sarah Mackie. She expressed utter shock and horror in a meeting recently that rheumies would approach a case with their chosen reduction approach, fail miserably because it was too fast and not change the way they set about it. Her face was an absolute picture!
It is great when you stumble across people like Sarah Mackie, they seem to be few and far between, but they shouldn’t be!
I'll give you the far between - my top 4 are in Leeds, Chertsey, Norwich and Bruneck in northern Italy!!! And being greedy - I know 2 other very thoughtful and good rheumies in the same hospital!!!!
It just should not be like that.
Unlike trickle down economics - there is a good result with a good head of department influencing their staff!
I think a lot of our problems nowadays is due to bad management including the NHS.
On the part of the bunnies with clipboards who either have never done the job or not in recent times. But the new health secretary doesn't seem any more with it than her predecessors - Oxford commas my foot!!!!! And doctors are to blame - there won't be any to blame before long. I'm hiding here until the NHS recovers - may be here a long time.
I live near Chertsey: do tell!?!
The name Rod Hughes is mentioned on the forum regularly. He does NHS at St Peters and private work at Runnymede
Google "rod hughes rheumatologist" and you will get a load of links, He seems to have dropped his own website
topdoctors.co.uk/doctor/rod...
thank you very much! Appreciated👍🥰
Hi PMRpro,
Who is the good one in Leeds please as that’s the nearest to me out of the list you gave?
Thanks x
Prof SArah Mackie but she is only part time clinical, does research the rest of the time, so her waiting list is very long. She doesn't do private work.
There may be other good ones who work with her - but I don't know the Leeds team
what a fantastic video and sounds a top bloke. Better than the one I posted. Thank you. Tho he mentions 10 months treatment. But I guess as you are advocating him he does know it can be much longer and he doesn’t stick to the 15mg pred he mentions here etc. this is him kind of putting in a nutshell.
I hadn't looked at that - thanks for pointing it out. It is new. Better than the average report of rheumies on here!
Stiffness after sitting for a long time eh? Is 10 minutes a long time????
I think we should start making videos. Of our own time zone. Ten minutes equals an hour. Morning equals all day. Age 70 equals 50 and on !
I know 9!!! Imagine that !
I think there are a couple on the forum who got off pred in that sort of timescale - BUT they had whatever it was after Covid - Long Covid with PMR symptoms??????
that’s a good thought actually
thank you so much for the video.
that was very informative, thanks for sharing x
Very clear and helpful, thank you for sharing
How do you define common ? I thought there were only about 45,000 of us registered in the UK from 60 odd million and generally speaking it hasn’t been heard of before diagnosis.
If you restrict the age range to over 40s the incidence rises dramatically - it is common in the affected age group relative to other rheumatic disorders.
Yes, thank you for posting.
Thank you for this video so helpful
I sent an article to my rhumy written by Dr Mattison (so) of Mayo Clinic on the length of years being more than two years having PMR.
I asked the rhumy for a discussion the next time we meet on why he believed PMR only lasted two years. At the next visit he never brought it up. Either he didn’t read it or didn’t want to discuss it. He’s not much of a talker in our appointments but sits and reads the little computer screen.
Thank you! This video would be a great tool for family/friends who are interested in learning about this disease that you are battling.
Just so long as they don’t zone in on the 9-24 months comment!
I agree. It does explain it very well. But With us watching with them to point out the incorrect time scales !
Hi Buttonshutton - we were in touch on NMP - I hope things are progressing well for you.
hi. Currently stuck on 10mg but plan to taper to 9 very soon. Finally got some 1mg tablets in order to do this. Reckon I’ll be battling this for a while yet. But I think it’s at least under control. How are you doing
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