Issues with my ex-rheumy just keep on growing as I look back. I am waiting for a call from my GP, hoping he will accept me back for care, that he will not need another rheumy and will discuss my concerns about tapering.
Anyone know what resources a UK GP has when she/he inputs 'PMR' to the computer? A GP could google to see everything else (but obviously they don't have the time).
I presume he would get the NICE guidelines, but what else might be easily available?
Thank you.
I do not see a rheumatologist only my GP who seems knowledgeable
Can't help on what resources they have, but like KJ I only work with my GP and at the moment they seem happy to follow my Pred requests and Tapering plans. However, it is strange as I haven't physically seen a doctor yet, all done over the phone. Haven't as yet though had any disaster problems to sort out but they are doing f2f if needed.
My GP said she wasn’t allowed to refer me to a Rheumy, so I went privately to Prof Dasgupta. When I complained that my GP had tried to Reduce my Preds Too quickly, he replied that he had written the guidelines 🤣
Are you saying your GP was part of the group with Dr Dasgupta who wrote the guidelines?
My ex-rheumy wasn't following the guidelines which is why I sacked the duffer. I hope that my GP will have access to resources that support a slow taper, such as the guidelines.
You won't find any such resources that will support as slow a taper as we bang on about - not that actually it is particularly slow, the difference is the change in dose is spread over a few weeks not from one day to the next, you are only ever about a month behind but it works better. However - almost all guidelines say 1mg at a time below 10mg daily dose and that the taper should be adjusted to the individual patient and taking symptoms into account. I suspect you are being rather optimisitic about "resources" too - OK, it is 11 years ago but the PMR-savvy GP in my practice taught the totally non-savvy one how to use google to identify information!
The DSNS taper is being looked at in a clinical trial being done in Leeds and Prof Sarah Mackie has written favourably about it - not sure where that is though.
Actually, I'm not wanting my GP to find anything other than the NICE guideleines - because I know I'm in line with those - on all but the timing, as you say! 
I may need to argue along the lines of 'The guidelines say 1mg after 4-6 weeks on 10mg: I am asking for 1mg spread over 2 months after 26 weeks on 10mgs'.
Good to hear about the Leeds trial. I'll see if I can find a reference to Sarah Mackie's writing.
Thank you.
Doubt it - I think it was a report from jinasc on here somewhere bit not a post as such. It may be in a Newsletter.
Have I given you this link? I know I mentioned it re the 26 weeks on 10mg:
rcpe.ac.uk/sites/default/fi...
Yes, thanks. Two things: Vanessa Quick then recommends dropping by 1mg not 2.5mg (25%). And 26 weeks falls between 'the usual' of 4-6 weeks and a year. So I am dismayed on two counts (besides the other duff stuff my ex-rheumy has said).
I think I have referenced the jinasc link below.
No I imagine the Prof wrote whatever guidelines GPS use? He is President of the charity.
these are NICE guidelines based on Prof Dasgupta et al recommendations - so they won't be any different to anyone else's
cks.nice.org.uk/topics/poly...
Personal Opinion is - tapering regime in the guidelines is too fast (apologies to those concerned) - but it does say somewhere "in agreement with patient" - something many doctors - at whatever level chose to ignore!..
...and you'll be hard pushed to find a slow taper anywhere in any "official" guidelines.
Thanks. I thought you would be along.
I have used this link: academic.oup.com/rheumatolo...
I completely agree - quote from the guidelines "Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes".
This patient wishes slower than 1mg but would accept 1mg if GP insists.
Have't found any mention to slow taper but have seen, several times, a suggestion that the taper guidelines may need to be adjusted downwards for some patients. Then there is that Scandinavian (?) doctor who advocated a slow taper (PMRpro has referenced somewhere).
This is he gentleman - and a post
ealthunlocked.com/pmrgcauk/posts/142994447/my-story-with-pmr-gca-ragnar-sweden
oops, link doesn't work for me.
I'll be back after reading other articles in my file.
An h got left out in the copy and paste so HU doesn't recognise it as a link and turn ot blue ...
I’ve been searching for a slower taper, especially for the 60mg to 20mg, as my GP keeps saying we need to get you off the high dose fast i.e. 10mg every 2 weeks. I did come across a taper which said from 40mg reduce 5mg every 2 weeks, but I can’t find the reference agaIn (anybody come across it, please let me know).
I’m not really happy, with the above, but it’s what the 2020 guidelines says, as an example, and notes underneath say other regimes are available such as 10mg every week, which is obviously even worse!
Has a straw poll ever been done to see how many GCA, flare in this stage? Just wondering.
Ideally, I would like some evidence to present to my GP to slow things down a bit. The search will continue.
All I can say is 2 things -
1. At higher doses you can obviously taper more quickly - so long as it’s not suicidal and the initial dose gets things really under control! You have more excess Pred in system.
2. My first 8 months went like this -
My Start dose April 2012
80mg - 2 weeks
60mg - 8 weeks
55mg - 2 weeks
50mg - 3 weeks
40mg - 2 weeks
30mg - 3 weeks
25mg - 4 weeks
20mg - 5 weeks
17.5mg - 4 weeks
15mg - 6 weeks (Xmas period)
Would probably have Rheumies in a panic - but no flares - ever! So to me a success story.
PS - initial reductions agreed with consult Ophthalmologist and later ones with GP - based on my lack of symptoms and backed by blood tests.
Initial high dosage/time factored in sight loss pre diagnosis - so maybe (definitely) not typical plan!
Fantastic no flares, seems by far the best way, and the thing to aim for, definitely a success.👍
I have had 3 blood test so far, day 0, day 6, and 2 weeks later (10 days ago). The CRP has normalised from 233 down to less than 4. The PV , they don’t do ESR where I live, went from 2.53 to 1.86 at the latest blood test.
Normal range for PV is up to 1.72. 1.86 per Exeter and Manchester hospitals (details I could find online , I’m in Scotland) lies in the high/ chronic condition band with ranges 1.75 to 2.00 or 1.8 to 2.00.
So, not entirely convinced that things were really under control before I tapered to 50mg 4 days ago. Thoughts?
On your taper it takes 29 weeks to finish 20mg, on my 10mg every 2 weeks (from 70mg) it will take me 12 weeks, a bit quick for my liking, subject to flares of course!
Yes the 6 weeks @ 60 plus the 2 @ 80 makes a big difference - and in hindsight I think that really got a grip on things and kept me on the right track all the way through.
Plus it was me & GP for the first year at least and she was ultra cautious- understandably having missed it completely.
As always good advice.
My reducing regime is very different and from a higher dose - I do know that the impact upon you was far greater than me. I have absolutely no idea of how you might correlate the two sets of figures, however, I am sure that there are other factors which are taken into effect, such as age, weight, more up to date research etc - I can remember at aged 22 not being released from hospital until my dose reduced to 20mg. To be absolutely honest I suspect that you, like me, have faith in the prescriber; which in my case is my GP following direction from the consultant: standard practice.
I am fortunate to be able to contact my consultant direct via telephone in “working hours” or email, if an issue should arise.
Having faith in my original GP who missed the GCA entirely is not exactly the relationship we had!
But I stuck with her -she was trying to make amends- until my husband died and then I changed surgeries.
I had faith in the Ophthalmologist... and the more experienced GP I moved to.
Actually I worded my response badly. I also have faith in my GP; she was not involved in my case as, like many others, appear to be almost always absent.
It was a reluctance to see me in person which, despite having three telephone consultations, failed to diagnose my illness. I am having lunch tomorrow with the person who took 20 seconds with a physical examination, to determine GCA.
I have faith in my rheumatology consultant, who may not be very good - the first I have seen and who can I compare him with. But we have a good relationship, he is approachable and amenable and I have no alternative.
On a separate note, I had a discussion today with a lady who lives in my village, she has GCA and her maintenance dose remains at 60mg daily and she has been taking that “lower” dose for several years.
Wow- that doesn’t sound very good! Does she have anything else to account for such a high dose?
Perhaps not.
This is quite a forthright lady. If she didn’t share, I didn’t want to ask. I couldn’t make comment other than I suspect that her condition might be multi faceted and I am confident thaT her treatment is appropriate to her needs.
Nice to chat with her though as I had no idea until today.
THAT is crazy - and would qualify her pretty easily for a trial with tocilizumab. I find it difficult to believe any rheumy would leave any patient on 60mg for a year these days, never mind longer!
My first consultants appointment is mid- October, 9 1/2 weeks after diagnosis, so my GP is running the show at the moment.
I did see the Rheumatologist for an initial ultrasound. At the time I asked him if he was sure of the diagnosis of GCA, he said the GP had only asked him to do the ultrasound and it was up to the GP to decide if I was to be treated for GCA. Specialist referring to GP opinion! So rather confused how the system works in my area.
Just for interest: Link to the European League Against Rheumatism/American College of Rheumatology collaborative initiative: 2015 recommendations for the management of polymyalgia rheumatica.
onlinelibrary.wiley.com/doi...
Prof Dasgupta took a leading part in this.
I note this: "Treatment of PMR patients should aim at the best care and must be based on a shared decision between the patient and the treating physician".
It recommends tapering by 1mg after reaching 10mg or, as an alternative, alternate days of 10mg and 7.5mg (which is not recommended by some other experts).
Am 20 months into PMR after diagnosis, Started on 40mg., after 20mg my GP left me to taper at my own speed. I am down to 3.5 going very carefully. Will drop to 3mg when I feel my body is ready to try it. I don't know how many are the same as I am, that is to say, I live in this body so know it best.
I am not sure what my GP has access to but she is on the ball, thank goodness and advises slow tapering after 10mg. and I have blood tests on a regular basis. She also asked for a diary of BP readings and I have had a letter saying that if I have any worries about any symptoms to make an appointment. I feel so lucky after reading some of the difficulties others are having. I have also had a bone scan. I now take Omega 3 with Vit D3 and have stopped Alendronic Acid because of the side effects. I feel really well at the moment (10mg)
Is your GP young and recently trained (in UK?), by any chance? I have a theory that such GP's are better - to be expected I suppose.
You are very lucky and your GP seems to be doing everything that I hope my (older) GP will agree to. Appointment with him tomorrow so 'wait and see'. I'm fairly hopeful of a good outcome.
How long have you been on 10mg? Do you know when to expect to taper?
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