This is Open Access so everyone can read it. It is something I think we should all have a read of, some will be beyond most of us and some is just plain boring but there are points in it everyone will understand and can bring to the notice of their doctors when they are being forced to reduce their pred but still have symptoms. The lead author is my rheumy and Lorna Neill is a patient from the Scottish PMRGCA charity, representing us all. Sarah Mackie is also mentioned. The group comprised 29 doctors from 10 countries - it is truly an international opinion so your rheumy can't say it doesn't apply where you live!
Above all - read the Abstract even if you don't read anything else!
"Five overarching principles and six-specific recommendations were formulated. Management of GCA and PMR should be based on shared decisions between patient and physician recognising the need for urgent treatment of GCA to avoid ischaemic complications, and it should aim at maximising health-related quality of life in both diseases. The treatment targets are achievement and maintenance of remission, as well as prevention of tissue ischaemia and vascular damage. Comorbidities need to be considered when assessing disease activity and selecting treatment."
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Thank you for sharing this. I have completed my first read and will need more readings for full comprehension. It did strike me how much of this good practice we have arrived at from sharing our own patient experience. In no small way thanks to you PMRPro. X
I'd like to think that Lorna and I have contributed quite a bit to this because of our insistence on certain things over the past 10 years! I've lost count of the zoom-type meetings I've attended and banged on about the fact you should NEVER be reducing relentlessly to zero but are looking for the lowest effective dose that allows a decent QOL which is what counts most. Sarah, bless her, still thought last summer that if a reduction fails, the doctors adjust their approach like she does!
We are hearing a number of hair raising stories from posters about the “ confident” mismanagement of their conditions and the all too predictable results. These particular doctors need to be brought into line. I am so grateful for your tireless work.
It's their sheer arrogance that shocks me the most, I have experienced it myself, it leaves you very downhearted dealing with what is already a struggle....
I found this to be interesting. The past is the past but I realize how much the handling of my GCA was wrong. I followed my rheumatologist’s directions exactly because I felt he knew best. On heavy doses of steroids my inflammation markers went to normal, then very slowly kept rising as I tapered. I was getting minor headaches but was told to keep tapering. Eventually at 10 mg everything crashed and I had to start over. Even then he didn’t think I was relapsing because even though my inflammation levels were rising, he felt they were still well below from when I started.
I could go on and on about different things I felt were wrong with his treatments. After reading here I started doing my own thing. He was actually ok when I told him how I was going to taper. I’m now off prednisone but on Actemra. My quality of life has improved drastically. However, when and if I can get off Actemra is another story.
Hearing your tale suggests to me that - like a lot- your doctor simply didn;t understand what GCA actually is. They seem to think that it is inflammation that is removed by the high doses of pred and then all that is to be done is to taper of the pred and any problems encountered are either due to pred or the patient's failure to do as they are told and not that it is due to an on-going disease process and all you can do is mop up the mess. Some appear to not understand that even Actemra only puts a plug on the inflammatory stuff - the actual disease process is still there, running in the back ground but being held in the air so its feet can't get a grip. What is needed is a way of stopping the autoimmune dysfunction but that is still in the stars.
”the actual disease process is still there, running in the background, but being held in the air, so it’s feet can’t get a grip” Love this PMRpro, so vivid! x
I see they again mention “disease mimics” under recommendation 6, when tapering. I have heard this mentioned by both my rheumatologists and always have wondered how pred knows wether you have PMR or GCA or both,! That’s pretty smart for a 5p tablet.
That isn't PMR/GCA though - that is inflammatory arthritides, lupus, fibromyalgia, other or more extensive forms of vasculitis. Spondyloarthropathy, including ankyosing spondylitis, can do a good take-off of GCA when the neck problems affect blood flow to the head. Lyme disease and cancers also crop up at times.
Thank you. I always take notice of your and other regular's comments gratefully. PMR 5 years, with osteoarthritis, tendonitis etc , currently on 5mg, My rheumatologist has been discussing methotrexate and I am not keen to include another drug when I am managing with 5mg. Thanks again for this wonderful forum.
I have Spondyloarthropathy CarysR. Like you, I'm currently taking 5mg Pred. My rheumy has just written to my GP to say that I am at a dose where it would be safer to carry on with Prednisolone rather than consider any other DMARD therapy such as Methotrexate.
Hope that it helps, CarysR. I was the opposite, PMR was diagnosed but I went to see a rheumy privately and he said immediately it's not PMR, it's Spondyloarthropathy. For completeness, I do also take 300mg Hydroxychloroquine, which he says 'calms the system', and from which I have no side effects that I am aware of. Good luck with sticking to your guns!
Really interesting. The idea that the target could be low disease activity rather than complete absence of disease activity was a revelation to me. And also that it can be acceptable to live with a long term low dose of GCs. Less pressure to get to zero! I was under the impression that the only target was zero disease activity and zero Pred.
I found out from experience through 2021 that disease activity can rise even after a long period of time with good control of symptoms at low doses. Oddly enough after a major flare caused by increased disease activity for the first time in my PMR journey my inflammation markers actually got down to a properly very low level! So it really was almost like a whole new experience of PMR.
This exactly! I’d gathered as much from this forum, but neither my GP, rheumy, NHS website etc give any clear indication that it’s really disease management that we’re into, rather than cure, then get off the meds (though obviously getting off the meds would be great - if possible) Thank goodness for this forum xx
PS Actually, to be fair, I’ve just re-read the basic NHS page and it does say that pred treats the symptoms, rather than being a cure….but it’s not very upfront about it and as a newbie (two years ago) the implications of that were not obvious to me…..
I think in a way it is a target, but more of a desirable outcome rather than one which we can actually work to achieve! Our job really is to manage the pred so we end up taking as little but just as much as we need in order to have our symptoms under control and enjoy a reasonable quality of life. If at some time pred is no longer needed because we've gone into natural remission, so much the better. But we can't make that happen.
Yes, an ideal to aim for, but not the be all and end all. I will be satisfied with no pain even if I have to keep on a small dose of Pred to achieve that. It's a discussion I haven't yet had with my doctor, though.
Really good read and many thanks. Question, do these sort of research documents get automatically sent to GP's? If they don't and we send them a copy are they likely to get "grumpy" with us? Will just add that as I have no problems with my GP.
Having suffered from Essential Tremor (another misunderstood condition) since my teens, I wrote an article from the patient's perspective and gave it to my GP. She phoned me after reading it and asked permission to pass it round her partners and other GPs, as it raised so many points they were not aware of. I suppose it depends on the attitude of the GP but I think we should take every opportunity to 'educate' some of the medical profession. Many thanks to PMR pro for sending such an excellent paper.
I know my rheumy is exceptional - but he seems very aware of this side of things, And cares. The rheumies I saw as a patient in the UK couldn't have cared a toss. I hasten to add, my rheumy friends and colleagues in the UK are rather better!
I will send it my doctors/surgery, but not until they have sorted out my medical records and the NHS App problem (admin problem not doctors), which may have made them grumpy and I don't want two grumps at the same time, particularly as they have been very good with my treatment/s so far.
I am more than happy to share my article - I just have to find out how to do an attachment on this site !. Going away for a few days but I will get back to it on my return.
Thank you so much for the excellent article. I’m going to make sure my partner reads it and takes it with him to the unexpected rheumy appt he has in April. This is with the idiot who wasn’t convinced he had PMR and was already talking about methotrexate only a few months after the GP diagnosed PMR and 20mg of steroids had worked their instant magic. We’ve heard nothing from the rheumy since a phone call in October 2021 saying he’d ring at the beginning of 2022 to see how things were. He didn’t! My partner is almost at the end of a very slow 7 week taper to 5.5mg and doing ok apart from weight gain but as he absolutely refuses to give up carbs……..,… I really don’t want him to see the rheumy as know he’ll want him off pred asap but I’m hoping my partner will stand his ground - he doesn’t like having to take pred but he certainly doesn’t want to add another med when he’s reducing slowly without problems. Thanks again for all your advice and info 👍
Thank you this diagram enables me to realise I have PMR alongside GCA. Does arthralgia come under the umbrella of PMR? I was diagnosed GCA Jan.2022 and have tapered down to 8mg to date but get very tired each stage of tapering. I reply to others posts but have yet to make my first post not sure how! Wonderful forum so full of information and support one doesn’t feel so alone with it all. 🙂💐
Top right of the page - blue box saying Write, click on that. In the upper box you put a title indicating what the post will be about and in the lower box you write your post, question, comment and click Post at the bottom right. Just the same as replying really. And if you want to find it again - it is listed on your Profile page
so interesting - thank you for posting it on the Forum. The experts should have contacted you first as having been a member of this site for nearly seven years now, everything they researched & analysed has been discussed & answered (by our own ‘in-house’ pros/experts & ‘old hands’ here already! I have had more worries & problems over GCA & steroid side effects sorted out by advice & peer group support than probably any of the many medics I have been sent to.
I know - I'm just so glad they have finally reached the same conclusions we have! Trouble is, they need the scientific backing to say these things ... But most of it is common sense and logic based on known facts
thank you for this, after 8 years of no help from doctors in two practices I am down to 1.5 mg, my fear now is adrenal glands not working, how will I tell, I have stenosis of the spine which causes me pain when walking, I monitor my PMR symptoms by lifting my arms, if I can do this I know it’s abating, so so far so good
Thankyou so much for posting this report and for your personal contribution to the research team. It certainly confirms much of what we already discuss on this forum and gives hope that better understanding and treatment will come from shared knowledge.
I consider this an essential read for anybody newly diagnosed and a useful tool to present to the less well informed medics that we all encounter. It’s deplorable that doctors and rheumatologists are still giving patients so much misinformation, hopefully some of them will learn something from this report.
Thanks so much for posting. It's great to have the overall picture including the unknowns. I'm now on 'maintenance dose' for a stable period. My French rheumy at least understands there is a patient group who can be chronic sufferers. She is also one who keeps up with the literature and the attending of conferences: I feel lucky to be under her care. Needless to say this forum has been indispensable. Thanks PMRpro for being forever persistent in refusing to give up on saying 'never be relentlessly reducing to zero'.
Funny isn't it - most of Europe gets that, not the English-speaking contingent! And Italy and Spain are pretty good at it - the European countries with the lowest incidence.
Thanks for this. I have read it and find it most helpful and I'll be printing it out and taking it to my next rheumy appointment in 4 months time! I only wish that they had tackled 2 issues: the 2 year myth - my rheumy seems to think it is imperative to get off steroids in 2 years; and the need to monitor for diabetes, which is not done at my rheumatology department because, apparently, any diabetes is only temporary and will only last for the 2 years max you are on pred for!
To some extent it DOES tackle the 2 year myth - because it does signal the need for long term pred management. And the monitoring for diabetes is part of all previous guidelines. For a group of physians they appear to have forgotten basic principles and that sustained high blood sugars damage tissues however long they go on. And it is very very clever of them to be able to distinguish between pred-induced diabetes and the other sort - the effects are the same.
You can always ask the GP to do the Hba1c level every 6 months which is adequate - seeing it starting to rise is a signal that BS is rising.
Thanks, yes I did ask the surgery to do this but was refused. However at my medication review I asked the pharmacist to raise this and I was then allowed a test!
My biggest bugbear at the moment is that although I can see my test results on the NHS app, it's only the ones done at the surgery. I can't see the ones done at my rheumy appointments, so have to wait 6+ weeks for his letter. They are (typically) very prose-heavy and only mention any test results if he considers them to be significant. In my experience (from hubby's rheumy adding a "by the way, please prescribe him a PPI", which was not done) GPs don't have time to read these letters properly.My rheumy was surprised when I told him that my rheumatology test results don't get added to my NHS records, and said they should be. Is that correct? If so I'll try to get it sorted! Or why can't hospital letters be worded as a series of easy to read bullet points?
Very much depends on the rheumy I imagine. I don't remember a lot about the UK - and it's changed anyway. I am in a system that actively encourages you to collect your results yourself though I rarely bother as my doctors tell me what I need to know and will print them out if I ask - saves my printer ink ...
Thank you so much for this. I was down to 1mg after tapering for more than 2 years and currently having a little (I hope) PMR flare, so I really want to learn more about this condition.
1mg is probably not quite enough and is allowing the inflammation to build up again - I assume you are familiar with the "How to deal with a flare" instructions?
I don’t know if I am. Four days ago I went up to 2.5 and yesterday the pain in my jaw hinge decreased. Shoulders, arms and neck still hurt. Do you think I should increase the Pred even more?
This, as I see it , is a canopy of very well qualified specialists and others coming together and pooling knowledge.
Each individual patient is different and has therefore different needs for this knowledge to be applied to and adapted.
The weakness occurs when non PMRGCA doctors are involved as happened in my particular case over ten years ago. I, as I have said previously, was in hospital ten days before a correct diagnosis of GCA was made. How I did not loose my sight in that time still remains a miracle ot me. (I was even tested for Gaul stones along the way)
The weakness in the system is non PMRGCA doctors not recognising GCA or was then. My own rheumatologist told me I would know more than some doctors.
In the time I have belonged to HU I have been very grateful to you and the others for sharing your knowledge. I have learnt so much over the years.
Thank you for drawing our attention to this. I have downloaded it for further perusal.
As always we are indebted to you. Thank you very much for this link. I will hand a copy to my GP who I think is in line with tha main points. It shows that my Consultant does not understand PMR (which is why I sacked him).
Many thanks - I've read once and will re-read more than once. If my GP ever shows an interest again I may refer them to it but whether they would read it or not may be another matter. Thank you for everything you do.
Thank you for sharing this. Just before I had a telephone appointment with my doctor I tested positive for covid. In light of this and after a short discussion we jointly decided that I would stay on 15mg of pred for a further week before considering any taper. To receive your link was timely as she was interested to have sight of the T2T paper.
Thank you for providing this. It's such an interesting piece of collaborative work. I couldn't find a list of the 10 countries that took part. I wondered if France was one of them?
As someone who has had GCA since January 2020, diagnosed April 2020, started on Tocilizumab in August 2020 and ended prednisone in January 2021, I am nearly at a point when I will stop the injections altogether and wait and see what happens. So to read this document was important for me.
While I am looking forward to being drug free, I am terrified at the prospect that the symptoms might return and that I am not in remission. To hear that the recommendation is that GCA patients should remain closely monitored and have access to their consultant long term is reassuring. I think when the drugs are stopped this is more important than ever.
If you click on a name it brings up all the affiliations below the author list - but no, no-one in France which surprised me a bit as I believe Christian has been collaborating on a study on tocilizumab in PMR in France.
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