I will be surprised if GP’s / Health professional are unaware of the national guidelines for the treatment of PMR/GCA.
I came across this from West Sussex Hospitals NHS and I am pretty sure that all regions of the NHS should have a policy on the management of PMR/GCA . My reading from this health forum indicates that patients are not given the necessary information for their medical diagnosis or treatment.
Hopefully information may help members to gain knowledge of tapering prednisolone.
PS I have worked in the NHS from 1981-1998 and Ireland Health Service Executive until 2015.
"I will be surprised if GP’s / Health professional are unaware of the national guidelines for the treatment of PMR/GCA."
I can assure you there are an awful lot who have never read the guidelines! And a lot of the guidelines don't necessarily work. They weren't drawn up by patients who'd had the experience.
Nevertheless, it’s important to have a baseline ( this has been through clinical research ) but tailored to individual patient.I called it individualise patient care, always working with the patient.
I fear you are wrong - there has been no research on the optimum way to taper pred in PMR which is a totally different scenario from reducing pred dose in acute use. It is something we have discussed a few times in the research group I am part of. There is no standard dose and no standard way to titrate it - in fact, many doctors are totally unaware that what they are supposed to be doing is titrating the dose. The various guidelines suggested vary from source to source and although every one I have seen SAYS the taper needs to be adjusted for the individual patient, it frequently isn't.
Prof Sarah Mackie said in a meeting a few weeks ago there needs to be some research into tapering and that if her first approach fails, she immediately slows it down and assumed all doctors would do that. When the expert patients present had stopped laughing she was horrified to hear that many doctors just repeat the same reduction scheme, expecting a different result. It isn't something I have experienced - but I have heard many patients tell such stories.
The experience of PMR journey is relatively new to me. Hands up, I am no expert in this field. I have managed to taper my prednisolone with modifications from the rule book on PMRThat means, I have individulised my tapering regime according to how my immune system is responding and my health in general.But having a baseline was extremely helpful, knowing where to start .In certain medical conditions, it’s always trial and error of medication before reaching the ultimate goal.
Having worked in the health system, I greatly value, guidelines, policies and research based evidence to provide best clinical practice for patients. May be things are done differently nowadays.
I too worked in the healthcare system - as did/do almost my entire family. But not everything has been properly looked at. YOU have individualised YOUR tapering approach - as have an awful lot of us and mostly more successfully than our doctors did. But therein lies the rub: too many doctors haven't the basic understanding that it is needed.
Just for confirmation, I am not a doctor, started with nurse training, in Epsom and worked my way up to an assistant director in ireland. I wholeheartedly agree with you that there are doctors/GP’s that have not got the understanding neither the communication skills.I can confer that there are many doctors that I won’t have faith in their medical expertises.In my days, patients were involved with their treatment program and given all the necessary information about treatment.
I have some medical knowledge and that helps me with my general well-being.
Same here - I went to a medical school to get my physiology degree, the rest are paramedics, nurses, my husband was also a physiologist and clinical scientist. All rubs off and can be quite useful
Guidelines are always good, providing that is all they are and not a prescriptive this is what will happen however well the patient is. I suspect that there will be many on this forum for whom those guidelines, most certainly didn't work, some were/are lucky that their doctors were happy to treat them, listen to the patient and modify/throw out the guidelines where neccessary, many others have not been so lucky.
Right, as long as those GPs & Rheumys’ don’t take those statistical probability guidelines and treat them as absolutes. Had a Rheumy tell me multiple times that the PMR should run its course within 2 years.😂😂😂 I’ll be passing year 3 this weekend. Diseases don’t necessarily run according to some arbitrary timeline. I’d like to see the variability of that data pool. Now there are published statements that 5.9 years is the average.
Need to treat each patient as an individual and adjust the taper accordingly and not push blindly ahead because of some studys’ results.
Piglette, even GP's had not seen them when I was diagnosed with GCA. I was extremely lucky as a GP in my practice had a patient over 30 years previously who lost their sight. She vowed never again................I was the next one...........
One day I will get around to adding my story to the FAQ section.
Piglette, people call me a spider 🕷 - if I like them I catch them in my 🕸 and they are extremely y useful they never ever get away.
I quite like the idea of being a witch and black and white is my ️⚽️ team colours known as the Magpies which is another thief probably borrowing people's 🧠🧠. 😉
First footie match at 11 in 1949 at the Gallowgate end with my Dad following weekend at the Roker Park end. Kids went in for around 3p (old money). Now that is enough of me going off piste again. 😉
I was and is working for me. I reduced to 5mg today and hopefully will be off it by November 5th. I have also exercised and done a keto diet whilst on regime.
I am pleased to see from your profile that you were diagnosed pretty quickly and I hope you have a smooth ride to remission. However I thought you might like to read a bit of history on reduction plans. If that thought is wrong, then I apologise in advance.
1) Guidelines: It took quite a bit of hard work to get the age range down from late 60's to age 50.
2) Support group meetings were formed patients got together and by chatting and talking about their experiences over the years it was found that although the guidelines said PMR would last for 2 years. Very few people we met PMR had gone into remission within the 2 years.
A major problem was in fast reduction of pred. This we found led to a flare with the result patients were yo-yoing and the result was that patients probably took more pred over the years. ( I do have an article by another Leading Researcher (Mayo Clinic on the amount of pred taken etc).
Prednisolone Reduction Plans.
Ragnar, on a visit from Sweden to the UK, attended a group meeting * held on 26th September 2011, and his story is in the Autumn/Winter Newsletter 2011 "You are NOT Alone" of the registered charity PMR& GCA uk North East Support (now defunct).
Ragnar (GCA and PMR) gave a very informative talk and explained he had developed a system for the reduction of steroids.
Included in the booklet, Living with PMR&GCA, written by patients for patients, is a chapter on ‘The Slippery Slope of Reduction’. (Booklet now not available).
Eileen Harrison (PMR) and the Chair (GCA) subsequently developed plans called ‘Dead Slow and Nearly Stop’ and ‘Tortoise and Hare’. These two plans have been sent out, free of charge on request, to many patients over the past six years, and they have worked for many patients. Dr Sarah Mackie, Patron, was interested and the following is the outcome:
Progress
Dr Sarah Mackie, Consultant Rheumatologist, is a leading Researcher into GCA & PMR and has kindly allowed us to inform you of progress being made.
Dr Mackie emphasizes that you should always talk to your own Doctor. We have also stressed this whenever the plans have been sent to patients.
“We have been trying out the Dead Slow and Nearly Stop(DSNS) steroid reduction plan as part of the FACT study protocol.
The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a research ethics committee; this study isn’t actually designed to test different steroid-reducing regimes, but is an exploration into causes of fatigue in people taking long-term steroids. We incorporated DSNS as an option on the basis that we know that DSNS, or something like it, is already used by many patients in the community and because we didn’t necessarily want to taper steroids over-fast in people who
were experiencing fatigue.
The study is still ongoing. So far, it seems that some patients find that DSNS suits them well, especially those whose symptoms tend to flare up when they step down their steroid dose.
However, DSNS will not suit everyone. DSNS is just one of various different approaches to tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this – you should always talk to your own doctor about what might be best for you.”
As PMRpro has said "I will be surprised etc". I totally agree.
The Charity has a fully funded (money raised in the North East called "Improving General Practitioner’s Knowledge of Polymyalgia Rheumatica and Giant Cell Arteritis". This project was due to start in the January - then Covid came along and it is on hold.
I live in hope that eventually that awareness and research into cause and cure of both PMR & GCA will eventually happen. It will not in my lifetime, but progress, more research since 2008 and it is continuing.
PMR GCA UK runs on a shoestring, with 2 part-time employees and everyone else is a volunteer.
PS: In the FAQ section you will find various Tapering Plans.
PPS: No I have no medical training whatsoever - just a GCA patient who got out of her pram. You can read my profile.
I am no expert in PMR. My journey(symptoms) only began after having the Pfizer vaccine. May be I don't fit into the demographics of the PMR. From my presentation in September 2021, my GP was able to diagnose immediately, followed by blood test (Esr and Crp were high) and confirmation by consultant rheumatologist.Through my journey, after 3 months of the recommended tapering regime, I then modified my own tapering regime. Now I am on 1mg and things are going well. On my journey I have had a few blood test done ( ESR and CRP Excellent). Time will tell if I can come off the steriods and I will never know if the pfizer vaccine interferred with my immune system?
Thank you and you don't have to be an 'expert', I am certainly not one. With your background, you might like to think about a support group for Northern Ireland............we could do with one.
In the meantime I sincerely hope your PMR journey continues to run smoothly.
Perhaps you might like to take a look at this survey you might be interested in:
INTERNATIONAL ONLINE SURVEY FOR A CAUSE AND CURE PMR AND GCA (POLYMYALGIA RHEUMATICA AND GIANT CELL ARTERITIS)
Patients from the UK & USA have collaborated to devise a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics. (quantisurve.com/cgi-bin/pmr...
As far I am aware there is no support groups in the Republic of Ireland . Upon having the diagnosis of my PMR, I have to research all of the medical material for myself. I will certainly take a look at the survey.
Thankyou for this, I've been struggling to get PMR under control since flare 4 months ago. I'd got down to 1mg following slow tapering plan when pain began again. One GP then upped to 7mg which didn't work, then my GP upped to 15 mg for 4 weeks tapering to 10 mg for 6 weeks. When I got to 9 mg after the 6 weeks the pain came back again. Decided to go back to 10 mg for a week, still in pain, have now decided to try 15mg from today for a week and then reduce again to 10mg. I'm really in a quandary, my GP only works part time but I feel she knows about me. Telephone consultations only, haven't seen her in person about PMR since January 2020 after initial diagnosis.
Really sounds as if PMR had gone into remission and you were nearly at zero - until there was a flare in disease activity and you were sent back to the beginning. The patients in a research group with Prof Sarah Mackie has been trying to bring this aspect of flares into the light - so many doctors are convinced that if you are on pred, it can't happen, Of course it can if the current dose is not enough to manage the new level of autoimmune activity. And I think we have succeeded - now the rest of the world needs to hear!
There is a little group of young rheumies that really are catching up with what patients experience. What would be great would be them forming a discussion group on PMR which others would join in with - I think Sarah is working on it!
A very helpful post, at times my "Reduction programme" has resembled that scene in North by Northwest when Carry Grant is being pursued by a plane through Cornfields.
I couldn't help but note that this 'guideline' was published in 2015 and that a review of these 'facts' was undertaken in December of 2017 and December of 2018. It would be of no more value if it was reviewed in December of 2021.
Even as a baseline or as a guide~~much, not enough, has been learned since this was offered to professionals. I think most of the profession has learned that people with PMR/GCA have unpredictable conditions....at best, at least, I would hope so. I understand these are not 'cookie cutter/ hard and fast' guidelines since the piece does refer to 'patients' and 'symptoms' and the word 'response'.
Again, in my humble opinion, the most important word on that guideline sheet is symptoms, which means Drs. really listening to patients. Some Doctors don't even realize that Actemra, TCZ, reduces the ESR and CRP to normal and they are no longer an indication of inflammation. This timetable also creates unrealistic timelines for patients who then get stressed they are not tapering fast enough.
I say this as a GCAer, on prednisone for three years as well as TCZ since Ocotber of 2019 and I have just gotten into single digits. Good heavens, I'd have lost sight in both eyes!!!
The most important guideline is the patient~! The built-in flexibility in this guideline just doesn't seem flexible enough. Should zero be the goal or quality fo life?
Just my thoughts and they didn't cost you a penny~💕💕Long live the forum!
The trouble is, the Guidelines are created by consensus - get a load of sceptic rheumies and you are stuck! That's why it took so long to get the new GCA guidelines out.
NICE's reason for not approving TCZ for more than a year was that the pharmaceutical company didn't "provide the data for longer term use". Which I find just a tad silly. I heard mention of safety data - TCZ is used much longer term in other rheumatological conditions so the long term use is familiar. And when it was suggested it had something to do with the demographic of GCA/PMR they did get a bit defensive ...
How are you planning to tapering from 1mg down to completely Prednisone free please ❓I'm on 1mg for the past few months. Having tapered from 20mg since August 2020.
The DSNS approach works there with 1/2mg as the new dose and stages repeated a few times if you are nervous. Then zero as the new dose. But slow is good - in fact, very slow is even better
Many many thanks for your speedy reply. I had no idea that you could get ½ mg tablets. I assume that you mean ½ mg (half mg) as opposed to 1 to 2. I'm also in Ireland and my pharmacy informed me that they can't get ½mg pred. 🙄. She said that I could cut the tablets... A bit messy I fear. DSNS is the Dead slow nearly stop approach I guess. (Please forgive my ignorance).
Thanks 🙏 once again for your assistance and I cannot speak highly enough about this forum and the help it has been to me and to many others. 😊
You can't get half mg tablets anywhere - you use plain white pred and a pill cutter - sold by pharmacies or that well known online source begnning with A!!!
Yes - you need a bit of practice sometimes and pill cutters are also not made equal but it is less than a whole tablet - accuracy isn't essential. It is very common here in Italy to have to cut tablets of all sorts - far cheaper than them stocking a wide variety or rarely used doses.
That's fantastic information once again, Many Thanks 🙏. I'll be an expert chopper 🪓 soon I hope.. 😆. Is there a link to the DSNS method please as I know I've seen it but I just can't seem to find it just now... Silly me. 🙄
The link is at the top of every thread, below the original post - there is a section about tapering with other options too. DorsetLady has a slightly different version
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PMR/GCA v GCA/PMR
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