which has a couple of very interesting statements!
"... it remains important however to highlight that glucocorticoids are and do remain the mainstay of acute management of GCA, as outlined in the introduction. Qualitative work has demonstrated that rheumatology clinicians are “often under pressure from patients and their primary care physicians to taper corticosteroids” and that this may not always be what is appropriate "
I beg your pardon - who pressures who? Not our experience!
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Interesting comment. I read the paper and it referenced Endnote #17 which I provide a link below, however I could find no such related statement in that referenced paper that could support such as statement. Also since both of these papers center on GCA and thus higher doses of Pred and other drugs possibly these peoples’ side effects are more pronounced and egregious thus resulting in those patients pursuit of lowering or substituting out Pred.
But, I too have to agree, my fight was to not lower too quickly and push back against adding MTX.
17. Fraser JA, Weyand CM, Newman NJ, Biousse V. The treatment of giant cell arteritis. Rev Neurol Dis. 2008;5(3):140–52.
"Because adverse effects of corticosteroids are common and a source of serious morbidity in elderly populations, treating clinicians are often under pressure from patients and their primary care physicians to taper corticosteroids and discontinue treatment, with subsequent risk of rebound GCA and visual loss. A positive TAB result becomes essential in such cases to justify prolonged corticosteroid treatment, underscoring the importance of obtaining pathological proof of the disease at the time of symptom onset."
Just after Table 4. But there are no data to support that statement. So it is personal opinion and not a proven factor. It is likely to happen if they haven't explained properly. Something we seem to manage ...
I'm sure you are eager to get my dander up today .Over the last few days of reading about the care and knowledge , or should I say lack of it , that people are experiencing from the so called professional caregivers , I've been very tempted to write a post about the ten things I hate about doctors and nurses , or wish that they would learn not to do .
I think I need a mini pillow with an annoyingly smiley white coated doctors photograph on it to be able to punch to get it out of my system..... but what would I tell the doctor next week when they ask me what I've been doing for exercise lately?!😆😆😆
I really think she should send in some mystery patients around the country if she really wants her eyes opened. The people at the top really don't have any idea of just how bad the treatment and current knowledge can be on the front lines and just assume that all the information they make available is being read and used. Even we find it hard to believe and we are the ones who experience it!From my experience, I have to say that with all of my conditions most Doctors haven't read a jot, without sites like HU and patients finally educating themselves the world would be filled with a lot more very sick people , and unnecessarily so.
I truly believe we should get to the point of having recording in appointments that patients could request. It would certainly change a lot of unprofessional behaviour . Yes , it would also send many doctors and health givers running for the hills , but to be frank , as the people whom would leave are also going to be the ones that do a bad job anyway it's unlikely to cause more delays in treatment. It may even improve waiting lists ,as so many of us wouldn't have to use up so many extra appointments until we got to see a doctor that new what they were doing and made things better rather than worse.
Just occurred to me - you have to tell someone you are recording them but there is no reason why you couldn't conveniently forget the phone is on record and after experiencing such an unprofessional session you could bring it out to make notes and on "realising" ask them if they would like to revise their comments ... Or, on entering, tell the doctor you always record conversations with doctors since you struggle with your memory and want to get it right ...
You can actually positively and politely ask to record any appointment so that you can refer to it later so you don't forget things or have to take notes and not concentrate on them. They obviously have the right to say no , but I'm pretty sure just the thought that they could have been on the record would cause them to be more considerate in their behaviour.
My physio and my current cardiologist both suggested me recording conversations or bringing someone in to take notes as they know enough about my conditions to know that I could miss vital information.
I mean recording sessions should become standard for the professionals as part of policy ,,and that it should only be the patient whom could request not doing it ( but they would also have to give a good reason why).
If nothing else it would stop people forgetting vital facts , help carers whom could get clear info about discussions when the patient is not good at remembering or relaying things and stop professionals using inappropriate methods but could also help the NHS as much as patients providing proof of care given in complaints issues and poor patient behaviour.
Oh yes - I knew what you meant and I agree although there does come a point where you may be divulging something you don't want on record that others might be able to access
Oh , there would need to be strict rules of access , similar to the ones they already have about our written or computer notes would seem to be enough , as you will probably know yourself , it's quite hard getting access to notes for someone else even with the right paperwork .
Interesting point about recording appointments. When I had one with a orthopaedic consultant about my hip, at the end he recorded his findings for the follow up letter to my GP on his dicto machine. I was able to correct him on one or two points which he added to his recording. Shame they don't all do that.
The usual practice here is for the doctor to record the findings at an appointment on the computer at the time - fairly standardised for most items - and print it for you before you leave. The GP gets it as an email notification to read it.
Whereas here I have to wait 3 to 6 weeks for the letter, which only gets sent to you if you request it at the appointment. By that time you've forgotten what was said anyway. GP doesn't have time to read such prose heavy letters, as I've said before, why can't they use bullet points?
Most of ours is a pro forma but apparently one female Italian rheumy manages to write W&P about the history and infuriate the GP who only wants what has changed!
Yes, my cardiologist does that but unfortunately that means his note taking is very scant the dicto message then only includes the info required for the letter and presumably gets recorded over so it means there is a big gap in the information recorded in the charts and what was discussed.Fine , if I am seeing him but if I see or speak to someone else they find it hard to follow what has been going on.
Another reason recordings would help , especially as certain consultants I have sat in front of only ever write down points they are happy with and never write anything when you are telling them something they aren't interested in , something they don't want to hear, or something that you are correcting them on.
That's a good point. I've been telling mine about my sore and painful ears at every appointment but he never comments. I keep notes about any symptoms I have had and print them out to give to him. I'm sure he just throws them away.
Here goes…arrived 2.55pm for 3pm appointment. Couldn’t check in on patient screen. Asked receptionist, she said it’s 3.30pm, not 3 o’clock. Sat back down. Saw Dr in distance, he called out ‘Hi Sara’. 3.30 came…& went. At 3.55 he called in somebody else. (Dr probably thought I was there for blood test, or pick up…it was busy & a bit crowded, & he wouldn’t have seen me as he called in the next patient!) What? Then we had Big Nasty Patient shouting at receptionists,& walking out saying nasty things about surgery. Their two suppliers had been unable to get his eye drops, but are still trying, & they offered him a prescription to go to a pharmacy & get them…oh, no, he didn’t want that!! Well. I’d been there an hour by then! Asked a different receptionist if all is OK, & she went to check! I could see them out the back, the other lady joined her. Five minutes later, receptionist no. 1 said I had no appointment this afternoon, & that it was all her fault as she’d checked me in for 3.30. I said I’d go home. She said she wanted to make it alright. I explained I was due to have an injection so it wasn’t something easy to fit in, & I’m sure he is full re appointments this afternoon. She said it was kind of me to be so considerate about it, & apologised yet again. Heck, we are all human. I asked her to talk to the doctor & let me know when appointment will take place. The usual wait for this doctor is one month. Was a bit happy to go home, as my vertigo was getting worse, & I was feeling more nauseous (thought about your projectile vomiting, Bee!!) Others here have asked me to update the saga after meeting with GP, but no point in making this a post!! I think my last one had a record number of responses & went a bit off piste…bit like me, really…signing off for now, Off Piste, & Piste Off Pixix xx
This week has been a write off !Rest , relax , try and enjoy the weekend as best you can and hopefully next week will be worth it.
So sorry , I think it must be a thing .
I've been two weeks waiting for a phone or face to face appointment with the only doctor that will organise a prescription for the right meds for my now seven week long migraine.
Rang up he was having to cover the main surgery because of COVID , nobody rang to let me know.
So by the time I rang them all the non emergency appointments were filled and so they couldn't guarantee if I would speak to him.
The other two GPs in were the really useless ones so it's ring on Monday morning , when , they promised??? they will fit me in come what may!
I began to think of Hugh Jackman in Les Miserables, so now as well as tinnitus and a migraine I have a constantly repeating Musical Earworm !
Oh joy , oh rapture !!!
We must be the strongest people in the world mentally to deal with the ongoing health saga with all the symptoms as well. Which is why I have to stifle hysterical laughter these days if they ask ,," Do you have Anxiety?" .
Apart from anything the laughing would have me in the padded cell.
Oh…migraines are vile & evil, & shouldn’t be allowed. Sorry you’re having a medical appointment nightmare. Sometimes I feel you have to feel really well to cope with being ill…in order to deal with the ‘admin & stuff’!! Musical ear worm is naff…had it for six weeks after the Queen’s funeral…the slow March music!! Hope you ‘win’ on Monday. Rugby Six Nations matches here will dominate, so I’m happy!! Taje care of yourself, sending mahoosive hugs, S xx
I once sat in the waiting room for a 4.30pm GP appointment. Everyone else got called in and went home. 6pm came and went. A cleaner came in, I asked her. She said all the doctors had gone home and the doors locked.
Oh, no, that’s awful…can’t believe nobody asked you what you were waiting for…& checked the waiting rooms were empty before leaving! Thanks, I feel less alone now! S xx
Good grief , you must be such a polite patient , I'd have said something before that.I hope she offered you a cup of tea before you went home , at least you might have felt you'd come away with something.
My jaw dropped at the quoted section PMRpro. A lot of head shaking went on as I read through the article.
Why do they persist in highlighting the side effects of prednisone! I wish the Mayo clinic had followed up on their study. What about all the side effects of other medication! If I read it correctly nearly all the subjects in this study were on PPI's, which have proven to have serious long term side effects, many similar to prednisone.
We know about the 'potential' side effects of prednisone and many of us have found ways to mitigate them.
Always the pressure came from the rheumy team. my GP refused point blank to give me a prescription with the dose recommended by the rheumy consultant, who wanted me to reduce from 65mg to 30mg in one immediate drop. GP said "I'm not prepared to sign my name to that reduction, it is far too drastic". He gave me a prescription with the dose stated as "as prescribed by rheumatologist". I followed advice on here and tapered very slowly, resisting all pressure from rheumy. They gave up on the end! I am now approaching 6 months of no pred !
My most recent prescription says "variable dose according to response of rheumatoid condition". Although I personally haven't had problems attaining enough pred it seems the insurance company questioned a much increased dosage a couple of years ago when I had a serious flare and the pharmacist had to confirm the need for it (first 5 mg tablets in several years) before she'd be able to dispense refills.
Not ever had a Rheumy so have no personal experience, but my years on this forum would tend to lead to "what a load of piffle". I've been extremely lucky with having a doctor/surgery which has never put me under any sort of pressure.
Seems like nonsense to me. 20mg Prednisolone and I was pain free and moving easily. Why would any patient feeling that be keen to reduce? My 'side effect' was that years of dermatitis causing a very itchy, flaky scalp was also cured so no complaint there. My GP pressed for the taper but Rheumatologist bumped that up to reduce like it was a race to 0. Currently on 1mg Pred, a cupboard full of Naproxen, Eterocoxib and Codeine which do little or nothing and I have pain and stiffness every day. What patient would be asking for that?
They are fed horror stories - and no suggestion that there is any way to mitigate the less attractive effects. For some of us pred gives us our life back or we know how close we were to total loss of vision, me and DorsetLady respectively for twom and we value it above beign a bit cuddlier or bruises. I've had a bad time recently - pain like I haven't known since that first dose of pred - so pred remains my friend and it always will be. I'm going to be "stuck" at 7mg or so despite Actemra - but that is probably preferable to 19mg where I was this time last year.
Not being an expert on medical research, as I know some on here are, but is a cohort of only 16 patients regarded as a viable number for a research project whose results they hope will affect future diagnosing/treatment?
No not at all , if you look at research which considers the use of a new drug or treatment , or an existing drug which hasn't been used on a condition before a study of that size is classed as an interesting beginning but that much larger cohort or longitudinal studies would need to be conducted before anyone would consider following the advice , especially by the powers that make final medication or treatment recommendations like NICE.Which is partly why we can read research on treatments , especially things like Biologic Therapies and want to access them but then find we can't. The delays can be endless and the change only occurs when someone can get the research funding to test on a much larger study group , or numbers of studies are done , and then they are considered exhaustive enough for the treatment to be authorised.
However , after a treatment is authorised , or when long term care practice is examined , the printed research can be read by whomever has access to it and individual doctors or consultants can decide to try the alternatives themselves , or can be swayed into dismissing certain new practices because they are persuaded by the point of view in a study no matter how small the study group may have been. Occasionally, negating all the good work that was done before by other more extensive research.
Often , this is quite useful , if the change in management is better than the outdated ones , that people show resistance to change , as self reported information on their success is filtered back through the system it adds weight to getting better treatment changes overall.
But often , a prejudicial comment , or judgemental assessment , within a paper like this can cause a negative effect in patient care because the professional reading it uses it as a way to dismiss patients comments or concerns and push for a treatment management strategy which has little to no merit , and is potentially harmful , let alone successful. And of course , the failures are not reported through the self report study system as the successes are so it can take sometime before a bad management strategy can be rooted out.
Luckily , a poor professional using a scant comment in one article they read to excuse , or encourage the patient or other staff to adhere to their bad practice does not happen that often , but the phrase , " a bad workman always blames his tools " , can still apply to the odd devil in a white coat.
Last week I had an appointment with my rheumy. He asked me how I was doing. I told him I was not doing well -- that the fatigue and vision issues, if anything, were getting worse. Note: I had been at 60 MG for 4 weeks, then 50 for 4 weeks, etc. down to 30 MG at the time of the appointment.
He asked me what I thought we should do about it and I told him "I need to reduce the PRED!!!" BTW, he agreed to weaning down to 25 MG for 2 weeks, then 20 MG for 2 weeks, then the DSNS method afterwards.
I'm sharing this because, although you might not like to hear it, there are those of us who struggle mightily with these high doses of PRED and who actually are asking their Rheumies if they can reduce more quickly. I'm one of them.
This isn't to say that I (and others like me) don't appreciate the existence of PRED. We know we'd be blind (or worse) without it. But most of us know our bodies fairly well (since we live within them), and think we can sense when the PRED might be doing more harm than good. I suspect that the article you quoted takes into account that there are many folks out there like me who want off of the PRED ASAP (without sacrificing our arteries).
One of the main things I've learned on this forum is that we're all different -- we all have different PMR and GCA experiences. We all react differently to PRED. We're all coping the best we can.
When you have been on the forum as long as I have you will understand better that the number of patients NEEDING to reduce faster is FAR outweighed by the patients who are being pressured to reduce the dose too fast.
It is not that we don't want to hear it - we too emphasise that the dose should be reduced as fast as is reasonable especially at the very high doses used for GCA. but that the doctors often don't want to hear what the patient says.
I'm sick of reading my clinical letters and seeing how misrepresented what I have said during a consultation is.
The latest one claims I refused physiotherapy, as opposed to having explained how it has not been helpful and has caused further pain.
That most recent letter also ignores the fact that I had previously agreed to try physiotherapy again and the consultant had actually referred me, and the fact is that no appointment has actually materialized yet. So my GP has actually referred me locally herself.
Sorry a bit late to this party. To say we put them under pressure is ridiculous. We go in and say 'I demand to reduce more quickly!' Nonsense. If we were that confident we could just go ahead and do it.
When I started, I asked for the quickest possible taper so she gave me options. It was then suck it and see.
I would say there is a difference between GCA and PMR, now having experienced both. I was much more confident with fast taper with GCA but with PMR know the pred has to be shaved off.
Different ball game, Bluey, with GCA I learned to ignore low level head symptoms and taper anyway. Haven't had any since last October, but PMR kicked in at 2.5mg in Dec. Once I got settled on 5mg I have been managing ok, but have to be careful with exercise and not do anything repetitive. The reaction is very immediate. It feels like I am living PMRPro's bucket analogy and where I would take a chance tapering in the past, I am now sticking for longer and intend to reduce by a quarter at a time. I very much hope you do not develop it.
Thanks Viveka, there are fewer GCA-ers on the site so your comment is helpful. I too am learning to ignore low level headaches (brief, fleeting, occasional use of paracetamol) that occur after unrestful sleep. Then I get the fatigue, a vicious circle. I’ve tapered well over the winter and holding on now for a while at 10 mg. Latest bloods CRP 3; ESR 10 mg, creeping up a smidgen from last month so I’ll get tested in a few weeks and see how it goes. It’s the minutest stress I struggle with and I hate the side effects of pred. Sorry you’ve also been hit with PMR. I’ll keep my fingers crossed I’m not also one of the unlucky ones who develop both conditions. Thanks for your response.
That is certainly true on the higher doses [provided initial dose was used wisely] but once you get down to between 20- 15mg - where PMR is likely to cause an issue you need to follow the advise given/taken for PMR dose... in fact many of the GCA guidelines do correlate with the PMR ones below 15mg.
Ah, by fast taper I was referring to the guidelines taper which I think is 2.5 per month to 10 and then 1 a month below 10. (Though I personally think below 5 you need to linger longer eg two months perhaps). In contrast to the v slow taper below 5 if you have PMR which I am hoping to do now - eg 1mg over 4 months, watching how it goes. So a relatively fast taper not crazy fast. 😊
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