OK, so I've picked up a fair bit of knowledge about PMR as I've had it 12 years so far and read and taken in everything I've read on here for about the last 6 or 7 years.
As Columbo used to say (those of us old enough to remember). Something is puzzling me ... just one question ...
IF even as some doctors still believe, (The 2 year myth), PMR magically goes away in 2 years, even though the reality from research shows the average to be just under 6 years, then why on earth does the tapering plan the GPs and even rheumatolgists give patients mean in theory you would taper from the usual starting dose of 15 down to zero in about 18 months? It invariably goes wrong and then patients have to go back confused to with their GPs as they can't reduce further or they have flared up and often they are told to continue reducing. Am I missing something here? Is my maths wrong?
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tangocharlie
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Problem is the original guidelines and virtually all of the info taken on board by doctors [apart from some noted and sensible Rheumies - you know who I mean] still quote 1 -2 years duration for PMR. Whilst that may be true for about a third to a half of the patient... the others are ignored and labelled as "atypical". Not sure how 33-50% can actually be 'atypical' -but there you go.
Until there is a radial and sensible amendment taking note of all patients experiences, and new guidelines are "out there" for all read and take notice of, it will remain as such.
Even the NHS website says 'you may be on steroids up to 18 months' or words to that effect.
I feel NOTHING has changed in the 12 years I've been struggling, with the exception as you say of some good rheumatolgists who have emerged, and maybe, anecdotally, a few GPS who are a bit more clued up, but they seem to be the minority. And unless something is done at a high level to change policy and guidelines nothing is going to change.
Well there are individuals that are trying to change things, and we both know who they are, but it's like trying to stop an oil tanker at full speed at sea... can't be done as quickly as most would like!
Unfortunately, the NHS is an even bigger juggernaut!😲
I hesitated to answer your question because although I have experience with tapers and withdrawals; they are only in psychotropic drugs.
In this world I regret to say, the Drs are misinformed and uninformed.
$0 has been spent by drug companies on studies for taper off their drugs.
If you find the same condition in the steroid world you are on your own. I have consistently failed at tapers and find myself stuck on only slightly lower dosages.
For your information I tapered off Pred [with GCA so very extremely doses initially] very successfully with no flares at all along the way, despite caring for my very terminally husband for some time and subsequent bereavement.
All tapering was done as a joint agreement between myself and my GPs [2 different ones as I moved surgeries part way through].
I didn't feel I was on my own. and I'm sorry that you do.
it's good to know some areas of medication are more manageable and have predictable outcomes with tapers or is it a story unique to you?
Psychotropics are brain chemistry and wiring not well understood due to the lack of research studies and integrity of the pharma industry. It's about pushing pills and the $$$z
Not totally unique, many on here over the years [and probably a lot more never on it] have got off Pred for both PMR and/or GCA successfully.
You have remember though that the UK and many other places in the word have very different health systems to the US.
I have to say having been on this forum for over 10 years, yours appears to be driven by financial gain for certain individuals much more than many others. Best not take that any further.
The figures often quoted at 18 months to 2 years. Which is rubbish of course - no disease has a finite fixed duration. And ALL tapers I have seen say they should be adjusted for the individual patient - the codicil that is frequently ignored as inconvenient.
The Quick taper lasts 2 years - and reduced the rate of relapse from 3 in 5 to 1 in 5. I think that that was predominantly due to the year spent at 10mg avoiding many flares in the single figures range when patients weren't quite ready. And knowing Kirwan's reputation - the ones who struggled weren't kicked out but managed as we would like to be.
I'd love to ask Dr Quick what happened after that paper, why weren't the findings taken up?
And as everything on the NHS website should be evidence-based, where has this 'fact' that it lasts 18 months to 2 years come from? I'm going to write to Sophie and ask her to query all this on behalf of the charity.
I can't believe looking back that I was reduced from a starting dose of 10 down to 5 within about 8 months but could never get below 5mg. I was in agony and struggling but knew no better and tried to just keep going - I was trying to work and pay the bills as I was self-employed. And I kept being told that it would all just magically go away after 2 years. And I was putting on weight because the steroids increased my appetite and I was over-eating. so it was all my fault. If only I'd found this forum earlier.
One Rheumy passed me a sheet of paper and said follow this......it was very quick drops,in so much pain when I went back to him. He said if you are in pain it's not PMR!!!!....
I think they must think the Pred cures the PMR quickly so then all you need to do is taper off it once it's done the job. And that lack of knowledge causes us patients so much pain and grief
I don't think GPs do know anything much about PMR, we're reliant on what's in their heads along with the prejudices they have about steroids and they dogmatically stick to fixed ideas as they go along becaus they have no reason to doubt themselves
Yes it's a sweeping judgement I admit. There may well be some GPs who manage it well and some who don't, we just don't know. We hear about some cases of good and bad on here but as we don't even know how many people are being treated as a whole we cannot usefully conclude anything can we? But we do get a lot of people on here who presumably find us out of desperation because they know something isn't right wth their particular treatment, self included. My GP had never had a case before me and he'd been a GP for a long time. We had some newbies at a Yorkshire group recently who had just been told to go down by one mg of Pred a month. We asked if they knew about he slow tapers and they said no. So they thought they'd be off steroids in a fixed time. Their GPs had told them very little apart from to look out for the symptoms of GCA
we do get a lot of people on here who presumably find us out of desperation because they know something isn't right wth their particular treatment, self included.
As we say very often, unfortunately this forum shows a biased view of treatment and the illnesses themselves. If someone has good advice from their doctors re PMR/GCA and has a relatively easy ride, then they don’t need us or probably even the charity.
Yes that is possible and we can't extrapolate either way, but as we don't even know how many people are being treated for PMR we can't conclude anything. We may be seeing the tip of the iceberg or we may be seeing a representative sample. Without the data there can't be any analysis of distribution or means or medians or anything. Yet the info is out there, coded by GPs. It's just not being used. Autoimmune illnesses have been in the news recently as a number of celebrities have opened up and said they have one. A newspaper published an article of the most common types of autoimmune illnesses and PMR didn't figure on the Top 10 list, yet SLE/Lupus and Lyme disease did. Now it may be possible that is the case, or it may be that PMR is a relatively unknown illness hiding in plain sight?
Mmm… every time I hear something on the radio say , or a Facebook post re autoimmune diseases and chronic pain and a list is then reeled off , PMR is never or at best rarely mentioned …🙈🙄
It is mostly because PMR is a disorder of the older patient - some might say it is really simply part of aging - but since a large cohort of doctors insist only over 50s develop it, it isn't being looked for in younger patients and I think often younger patients are told it is fibro since they can appear so similar plus younger patients are more likely to have normal range markers. If standard practice was to have a trial of 20mg pred for 7-10 days, that would sort out the patients into inflammatory and non-inflammatory for a starting baseline.
A rather useless study is being carried out because apparently PMR is less common in the north of England. I say useless - because as far as we can gather the wrong question was asked and they are coming at it from the wrong direction. It is less common in the north because the patients with PMR simply don't bother their doctor with it unless their immobility becomes extreme. They don't appear on any data bases. Binge watching Casualty 24/7 which has been filmed in the ED of Barnsley Hospital is a perfect illustration of the state OAPs in the north of England have to be in before "bothering" the doctor or calling 999!
A perceived patient demographic of little interest economically and …😉otherwise ! The hospital information leaflet I received 10 years ago showed a ‘lady’ of a certain age/economic class judging by the pearls gazing blissfully through a window- presumably within the first 24 hours of receiving Pred. Before the taper is enforced 🤣🤣🤣! That’s interesting re northern statistics especially given the suggestion that Viking genes might play a part . ( I’ve often wondered what affected my northern grandmother who could barely walk to the end of the street when 60 on account of her “Rheumatics”)
Exactly. It is changing with it being identified in younger patients and the retirement age rising. Plus women in our generation have worked far more and longer than our parents did. Your gran almost certainly had PMR - like a lot of her generation and my grandfather and a great aunt as well but you just got on with it. At 70 it was assumed you would sit in your chair, knit and use a walking stick. Not quite our scene is it? Mind you - I do look at some of my peers and however PMR has affected me, they are in a far poorer physical state!
Probably a senescent (growing old) immune system. It's thought to be a accumulation of insults to the immune system and eventually it gives in - like anything older it wears out - plus there is a genetic tendency which is associated with Scandinavia genes. Obviously not everyone falls at the first hurdle, but by the time they are in their 80s it is thought about half with such genes have experienced PMR/GCA at some point. Since it isn't particularly obvious, it may not even register in many older people that it is PMR rather than simply getting older.
Yes, my family haa as be different immune problems RA etc. OH family, long lives very few problems. Glad he is ok, does most things, I do the cooking. Just grateful I am the age I am 73, my sisters granddaughter has died of a bile liver disease at 30…..non drinker too. We do what we can.
“Hormonal changes may contribute to the development of polymyalgia rheumatica (PMR) due to a number of factors, including:
Inflammatory cytokines
TNF-α and IL-6 levels can increase during chronic inflammation, such as PMR, which can interfere with steroid hormone metabolism.
Adrenal hormones
The natural decline of adrenal hormones with age may contribute to the development of PMR, especially in older people.
Vitamin D
Vitamin D plays a role in bone metabolism and the immune system.
RANKL
Receptor activator of nuclear factor-kB ligand (RANKL) is a key molecule involved in bone turnover and the immune system. “
I thought it might just be menopause related but as PMR Pro once pointed out to me, men get PMR too although I think more women are affected than men in a ratio of 2-1 but who knows as this thread says no real analysis done . I am trying low dose HRT and now down to 1 1/2 mgs with no symptoms - been here before mind you . An attack of Covid/ pneumonia/ sepsis in July with multiple intravenous antibiotics and starvation ( lost a stone and a half) seemed to shake it off . Continuing slow taper and have everything crossed .
Many thanks. Yes fully recovered and frankly feel the best I’ve felt for a long time. Can’t recommend sepsis as a treatment however and now have wrinkly arms ! lol. Missing the fat component ! Took 12 weeks to return to full health. Couldn’t hold a hairbrush when I left hospital. A lucky escape but I do wonder if there was something in the treatment that helped my condition. Dont suppose I’ll ever know.
my good advice from my doctor was to get the information pack from the charity! So far Ive been happy with the GP but with a new diagnosis you still have more questions than your gp can answer, not easy to even see them. Without the forum I would not have realised the importance of not overdoing things, good idea to do one vaccine at a time, and that we were trying to go down to a minimum effective dose not necessarily to zero. And the huge variety of experiences and reactions. Even where advice is good you dont always take it in in one go, and here I feel I'm getting a beyter feel for the situation.
Good to hear…and no it isn’t always easy to take everything in at the beginning.. and glad we are helping.
But when I have suggested at F2F or zoom meetings in the past that people join the forum - I have heard the comments that they don’t want to because it’s all doom and gloom. Obviously I put them straight😊.. but it may come across like that to some. That is why I say it may not be a true picture of how our illnesses and we are treated as patients are treated by the medical profession.
Luckily I was treated very well - once diagnosed- as I’m sure are many others.
Wonder what they call doom and gloom? As one of the people who reads every single post - can't say it shouts D&G to me, love and support maybe. And a fair amount of laughter ...
Sometimes if I'm in a meet-up or whatever and someone sneers at the idea of an online forum I ask "Have you actually tried it, you might find it useful, I do?" Nudge theory... You can lead a horse to water ...
TBF a lot of forums eg on Facebook are full of the same old questions repeated almost daily by people who CBA reading previous posts and answered by people who know little themselves. So that probably puts people off, it did me. I go on Facebook PMRGCA groups now and then to direct people to the charity website and Helpline and this forum.
I'm exhausted from this thread---must be a record length and fascinating.
I want to join Excelsior80 and others in an embrace of the forum...when I lost sight in my left eye in 2019, I would have lost my mind right along with it...if I had not discovered the forum. I was in a fog...the ophthalmologist I saw in Maine (my husband and I were separated, and I was living alone) put me on 125mg of prednisone a day. I saw her at 4 pm that day after sitting in the hospital since 3 am...and never received any medication. Life was a mess...then the rheumatologist fought about the dosage....I didn't know anything.
I don't know exactly when I found the wonderful forum, but I learned about what I had, how and why I lost my sight, and how to advocate for myself with the Doctor. In September 2020, I returned to Indiana and live with my husband, who has dementia. It really presents some good comedy material~!
I still look to the guidance of the forum before every visit to my rheumy....he only has 4 GCA patients in an extensive practice. All, like myself, came to him with sight loss because of a lack of proper diagnosis...I'd had jaw claudication for months and was told I had a sinus infection.
Bottom line...this forum can be counted on in a civilized way to get good information and engage with people who are walking the walk. We are all unique, be do share certain commonalities. I am still alone in a sense because of where my husband is in his journey. This forum has become my go-to for information, friendship, and support, and I want to give back to the forum in every way possible. I also belong to the Parkinson's group on HU. They have two Zoom meeting a week and it just folks sharing their tips ...I am such a newbie...I listen. As I listen, I know we are all different...but at least I'm learning the 'lingo'.The group's forum has a distinct personality..but I am learning.
My love letter to the forum....ALL of you. Xoxoxo 💞
I'm not so sure about the need (or not needing), DL. My preferred GP certainly seems to have a lot of knowledge of PMR, and an excellent understanding of how it affects patients, plus he is kind and supportive. However, it took me a while to find out that he was the best to help. Luckily I found this group quite early on, when I was feeling pretty bewildered and without the support of folks on here, I would have been feeling a lot worse than I was. I've gradually built up my knowledge, which has helped spot the BS and inconsistencies from some HCPs that I have spoken to, and certainly to realise that that rude rheumatologist was spinning me a line. He made me feel like I was some kind of under performer in not getting well quick enough and that I was like some smack addict. That's no way to treat a patient who is ill and in distress. Being able to read other people's experiences has been invaluable and even though the GP is good, the reassurance that it isn't just me and that other people are having similar challenges, stopped me from beating myself up about it all. And we all know how much a positive mental attitude helps patients to manage difficult medical conditions. The resource that we have here with our dedicated volunteers providing advice and encouragement and the collective knowledge, experience and support from the members of the group is something quite special, in my view.
Was just making the point that there are a lot of patients who aren’t on here, and probably for a variety of reasons… and we also know there are a lot of silent members who just like to read, and don’t feel the need to ask or respond to posts. Not making any judgements.
I know, I didn't take it that way. Just trying to say that we do need you and each other and how grateful that I am that I have had the support that I have found from this group. I hope my post didn't sound defensive, it wasn't meant to be. 💗
Couldn't agree more......had a very i gnorant Rheumy at first who put me in a lot of pain because of his ignorance.....he said to me...this is how I would treat my mother, immediately I thought and this is how I would treat that son!....with a clenched fist behin d my back!
I think that would be an EXCELLENT idea. If they trialled it in one area, eg Yorkshire, where they are supposed to be looking at the Northern Paradox of why fewer cases of PMR are diagnosed they could see if there was a good response and if worth doing in other areas.
It was when she was a student I think, It was presented at the RCPE at a meeting in Edinburgh. She still uses it in Luton.
I've mentioned my theory on the 18-24 months rubbish before. A paper was published in which the MEAN time to permanent discontinuation of pred for well under half of the patients in the study was 23,7 months. They quote the MEDIAN duration of pred management as 37.3 months. People didn't know the difference between median and mean (in my experience the only person who does in a research team is the stats advisor who tells them what questions to ask to get the results they want. Cynical me,) But those two figures show that the majority of patients needed pred for a lot more than 2 years and that there were a lot of outliers, not a nice smooth distribution. And THAT was what SHOULD have been taken from it. NOT that PMR lasts 2 years.
I have just read their version followed by Maria C Cid et al's version - REALLY not quite the same since her group says there isn't enough evidence to draw any conclusions!!! And frankly - I'd take their version over the other one any day!
Just had a quick flick through those articles. The one you say is balony is generally on the right lines apart from one major error, it says steroids put PMR into REMISSION and as we know it doesn't it just manages inflammation, but that might be one of the many myths that abound. BTW I hadn't heard of Sarilumab/Kezvara , it is availalbe inthe UK?
My baloney comment was based on THEIR interpretation of Cid and co's work. They presented it as what the review found - but their version differed ...
Kevzara has been discussed a fair bit on the forum, it is used on the US, highly unlikely to be approved in the UK though. Not until attitudes change. It's like TCZ, works on IL-6 but with a different mechanism.
Ah, I see, I think, as I say I only had a quick skim read. I've heard our American forum buddies mention being on Kezvara but not known what it was. Thanks again for the edification
No TC , it’s for this very reason plus a rheumatologist telling me to stay on 5mg for maintenance, that I’m personally in this current position. Stuck at 7.5 mg and needing more with the current increased adrenaline and stress.
It’s ridiculous, same with the ages for starting PMR . Like you I was younger, dismissed with a diagnosis of wear and tear .
My GP said she gets all her patients with PMR off Pred within 2 years .
I hope so DL , fortunately , she’s one of 10 GP’s . Plus their in-house pharmacist is happy for me to taper as I see fit . He reviews my repeat prescription and leaves it with 5mg , 2.5 mg and 1mg availability. 😊
Or more likely they just suffer and do as they're told because they trust their doctor. We get plenty of examples on here of doctors being wrong but I suspect only the tip of the iceberg find this forum and have the courage to challenge and educate doctors.
They might be off Pred, but they probably still have PMR, only they change the diagnosis to fibromyalgia because 'PMR only lasts 2 years'. That believe it or not was what a rheumatologist said to me after I'd had PMR for 4 years. It is scandalous how we are treated and our concerns dismissed due to widespread medical ignorance of PMR. At least we are the lucky ones who found this forum, I feel sorry for the others out there suffering needlessly. Something has to change. The charity's official line is to take medical advice but doesn't seem to understand that most of that advice is wrong and harmful
Since losing my Mum , whilst respecting their medical knowledge of human anatomy, I stand up to them and tell them.
I was bravely reading my mum’s hospital notes on Saturday, one doctor had written that I’d threatened to sue him so he’d paged for support.
I also learned poor mum was also diagnosed with Fibromyalgia as well as TMJ and frozen shoulder . I knew about the TMJ and frozen shoulders. So sorry you’ve been subjected to this awfulness.
This forum is both a blessing and a godsend.
I don’t know what we’d do without it and PPMRpro and DL .
We should all endeavour to put notices up in GP waiting rooms for PMR /GCA patients.
I'm going to put in a complaint about the missed diagnosis of spinal fractures and have requested copies of medical records, it'll be interesting to see the notes and I want to get them before I put in a complaint in case they 'get lost'.
Dreadful that your spinal fractures were misdiagnosed, so very sad and sorry.
I would request your medical records asap.
They do tamper with them unfortunately.
We were with my mum 24 hours a day, they’ve removed or altered certain facts . There was no disputing the reaction from my adult children and myself at the hospital meeting. We all stood up together, said that is not what happened . Also 3 separate dates for one entry in mums records amongst other things .
I don’t know why we find it shocking when doctors lie . Transparency , truth and honesty go a long way to restoring trust .
I had to complain about botched eye surgery years ago and loads of records and letters that should have been on my file had got lost, the GP should have had copies of every letter but rarely did. Sometimes I was copied in sometimes not so threee sets of records all very different. In fact rarely was anything even written in my notes after an opthalmology appointment. But after years of wrangling between the Trust and my lawyers it basically came down to 'tough, you signed the consent forms'. I've never trusted any doctor since and question everything. In the current situation the physiotherapists don't send letters to GP or patient so I don't know what if anything they put in my notes. They can't argue with the fact that they didn't diagnose spinal fractures though. It is so difficult to get redress against medical failings, I hope you get to the bottom of it. I have several friends whose parent died due to what seems to be clear negligence, one of sepsis, one because she was given a medicine it said very clearly in her notes and on the bed she musnt have, another a missed heart attack in A&E, but they don't want to do anything because it's too stressful on top of grief and they say 'won't bring them back'. But how else do they ever learn?
I don’t trust them one bit TC , one minute you’re relieved your loved one is somewhere you considered safe , before you know it they’re in danger. Twice I questioned what nurses were putting in my mum’s cannula. The first was Morphine, I innocently said, she’s allergic to morphine plus she isn’t in pain , so get away from her . She informed me the doctor had decided to start EOL , despite my mum having recovered.
Again another came, I asked what are you doing, she replied giving mum Midazolam I said no , I’ve already said no and pushed her away.
I said don’t worry mum the consultant is back tomorrow he’ll be delighted and we’ll take you home and go on holiday.
He spoke to me in the corridor, said his colleagues would treat but with his experience he knew mum would be back again. I was completely dumbfounded. I told him he couldn’t do it he isn’t God , neither is he psychic . I said we’re looking after her , she’s recovered . He actually laughed and said “ nice try “.
I started on them afterwards, I was convinced mum would show them but every time I gave them privacy with her they were giving midazolam and stopped fluids and food. My mum fought so hard, I was literally fighting staff .
I don’t want anything from them, I said the consultant needs retraining in the preciousness of life. The GMC said he needs to go on some courses but they get away with it using Best Interest.
I wouldn’t let my mum suffer, she wanted to live .
It’s a battle but my mum was always fighting for justice , it was in her nature.
It’s hard but it has to be done.
They haven’t got any excuses for not diagnosing your spinal fractures. They need calling to question that’s for sure TC.
Wishing you good luck with it all and a return to better health. xx
I find they all stick together when a complaint is made. Years ago at Alder Hey we had to have a discussion about turning off my 11 month old granddaughter’s life support and the doctor said “We wouldn’t be having this conversation if **** hospital had done their job properly” of course when we put in a complaint they all covered each other’s backs and denied that conversation ever took place!
I’m so sorry you and your family had to have such a discussion, dreadful memories for you and your family.
They do all cover each other , I have since tried to work out what other organisations or business groups would do such a thing. The difference being we are talking about human lives . Families need honesty , integrity and trust regardless .
Did they regularly do DEXA scans?...the reason I.asked is because 2 weeks ago I saw GP I asked for a scan, I told her I had lots of back pain, and knowing I have Osteoporosis, was concerned. She said no, you had one 2 and half years ago....they are every 5 years!....think she is expecting me to pay.....I can, but what about those patients that can't!!......
Oh yes. I wrote a post on it, my DEXA scans were always fine so it's a mstery - or means DEXA scans are unreliable. x-rays would be more use as a DEXA is only a glorified algorithm, it doesn't look inside your bones or tell the quality of them or even if one is broken as it only looks at the base of your spine and one hip.
Not a dexascan you need - it's at the very least an x-ray but preferably an MRI I suspect. If you are lucky (?) fractures will show up on an x-ray but probably not when read by a nurse or doctor. Needs a radiologist - that was who identified mine and flagged it up.
same here, it needs a detailed radiology report, though even I can see the fractures looking at the x-rays. I also had a CT scan and MRi but they didn't show anything useful re teh bones, jsut ruled out malignancies, the x-rays were the clincher
You could use it as part of the bigger picture to see if your bones have deteriorated, but on it's own it doesn't tell you the root cause of your pain.
Not sure, I need to go back for some adjustments according to the specialist physio I see. All the weight is going on to my sacrum which is very painful and she said the pressure needs to be spread out over a wider area. I think she was trying to say resting on my fat bum more 😆. Despite that pain, I am able to walk further with it on so hopefully an adjustment from the orthotics guy should help, or a different type of brace
Trust is something most here struggle with. The countless instances reported here are the tip of the iceberg. They emanate from arrogance and the lack of understanding many professionals show when their knowledge is challenged. A few of us are fortunate in their professionals and I suspect that they only respond to those they consider intelligent enough to engage with them at a level they can relate to. I am happy to share that my Drs practice in Barnard Castle is quite well versed in PMR and to a lesser extent GCA. There seems no limit to prescribing pred. and no timeframe. My rheumatologist Dr Plant is likewise a good egg.
Great comment Tangocharlie. I don’t get it either. Steroids are the only real treatment for the symptoms not the disease. From the moment we start taking them we are under pressure to get off them asap. If we don’t follow the standard protocol of tapering then we are left feeling that we have failed. I struggle with this greatly. This is a disease that we have little control over.❤️
Re the 2 year myth: I put it to my rheumy when I last saw him and showed him the poster from the charity. He stuck with his argument, saying that the evidence against PMR lasting 2 years is flawed as it is based on old records from years ago when people were just left to manage their pred dose on their own when they could've come off it.
This is new work from a VERY up-to-date group of rheumies. I had PMR for 5 years BEFORE I ever started pred - so how would he like to account for that? There is absolutely NO evidence of any other rheumatological condition and it is partly managed with Actemra showing a large proportion of my inflammation was due to IL-6. Bigotry in its worst form.
One of the main proponents of the 2 year myth action is female - she is aware of a few males who are nice as pie to her face but say all sorts behind her back.
Women have it tough in any profession. I know this isn't the place for politics but why are Trump and Harris even in a close race? Two people going for the same job, one is highly intelligent and competent, one is Donald Trump and yet she's having to compete??? Don't answer that or I'll get told off
Probably, that's what they do and they seem to get away with it as there is no answering to anyone. I once put in a complaint about one and was told 'I wasn't the first'
Totally agree . I had both for some time before being diagnosed. Judging from long term symptoms suffered for which I tried over years different solutions from, acupuncture, physio., massage, painkillers , osteopathy and training. All to no avail until I was curled up in pain and wishing for a quick end to it all. Prednisolone was a wondrous relief and at the time a gift. The long term downside was unfortunate and unavoidable. After 3.5yrs and now on a low dose i am hopeful. If there was anyone who could have wanted off this drug more than me I would like to meet them. The unfortunate truth is the reduction to zero or near zero takes time or else we risk flaring as I know only too well. Stupid remarks like those of Broseley's rheumatologist should be highlighted and reported to the governing body for their profession. I for one am sick and tired of hearing such arrogant piffle.
We need to organise a conference where the rheumatologists listen to us as the experts. I'd like to face doctors who say PMR doesn't last more than 2 years and bring them down to size!
Spot on , im over 4 years down the line and things still happen to me to do with PMR, i think its like the menopause it keeps rumbling on years after {they say it should be over buy now } !!So tapering can be like a ball of string slowly unraveling !
The likelihood is, it's in 'someone elses' interest to keep pedaling the myth.
What that interest is, i'm not sure, but life has taught me valuable lessons, normally when common sense & sound logic based on evidence gets chucked out, there is a reason.
Much like the ill informed say, " I know nothing about your disease but this book tells me you should be cured by now, so therefore you don't know what you are talking about!"
Until this becomes 'someone elses' problem, that bike will keep on moving.
What we need is a dirty great tree branch to be shoved into the spokes!....mythically of course!
I’ve spent 14 months tapering from 40mg to 6.5. It’s not been easy. But if I can get to 5mg or below I’ll consider it ‘job done’. I think a tiny dose of prednisone would be fine. Not sure why zero is the absolute end goal. I take a few other pills (eg. for blood pressure, a statin, a baby aspirin every second day) - not much bother to add another pill at my age (68).
Ive been wondering too, it would be nice to know not just average time on steroids but an indication of the 'normal' range, what proportion of people are at different timescales. I assume everyone is trying to balance symptom control with not taking more pred than you need. Hard with no reliable test for illness and recovery
Yes we absoluely need to know this essential information, should be the starting point for rheumatologists. PMRPro posted a link to a recent study but as with everything, those who don't want to accept the findings argue it's flawed. Hopefully the truth will out someday but it'll take time
The Wellcome Trust? A Lottery grant? The RCGP? I'm sure if the rheumatologists put their heads together they can find a way especially if would mean their names in bright lights as a guru and pioneer. It needs to be a key part of the charity's strategy - without an objective starting point how can we get anywhere?
I know that, I was just putting it out there in case anyone with influence eg Sophie can come up with a bright idea. When I win the big Premium bond prize £1m I'll fund it but only if I can then shove it up the @rses of any remaining doubters 😆
Maybe Im being unrealistic but if there is data already, wouldn't it be a possible senior medical student research paper? There was something recently about data on prednisolone use over time... off one of the interesting links you sent.
The Keele group have done a lot based on the GP database (or something) but Sara Muller who was/is? heavily involved ib the charity is no longer because of overcommittment. And that is the problem - the active people who see it this way have far too much on their plates. And believe me - a senior medical student paper really won't have that much impact factor ...
You’d probably need to make direct contact with Sophie or anyone else with clout at the charity.. not sure it will be read on here. Just an observation.. 😊
Do you think the research on flares by Max will result in helping what we are discussing. I once said to him why do they say this will go in 2 years? He rolled his eyes to say how ridiculous it was.
The rheumies, at least mine, seem to go on blood results. At my last appointment he said I could stop pred (I was on 1/2mg) as my PMR had gone, my bloods were normal on that dose. What he didn't consider was that the blood test was done 8 weeks before, because the appointment had been changed. When I told him I was suffering with my shoulders, knees and hips he said 'arthritis' and discharged me. I since ended up having to cancel my holiday (still waiting for the insurance). Off my own bat I upped my pred to 6mg and hey presto, all the pain went. Too late for my holiday. My XRays showed no arthritis.
So I'm now down to 2mg and keeping my fingers crossed. But I doubt I'll get to zero soon.
However, on another occasion, my bloods were quite high, but he said as I had no pain it was better to go with how the patient feels rather than the bloods.
I always need extra Pred to go on holiday, it causes so much stress on the body getting there and then trying to do sightseeing etc. If I don't it causes a flare
I wonder if the 18mths to 2 year applies mainly to males? Most I have spoken to (with some exceptions of course) are off within 3 years. I think its hormonal. This is just an observation as most men do not come forward for support.
Not sure. I know one male who has had PMR for 5 years. ( Actually, he is the only man that I have met who has had PMR, so not a very representative sample size ). He was another of the participants on my Bolivia trip and also on 5 mg. Told me that he has a long running argument with his rheumatologist about not being able to reduce below 5 mg.
You can count me in as another Estellemac. I don't think it's hormonal. You couldn't apply that to getting it so ending it must also be by the same rules. I think it is definitely stress related. Judging by a lifes observation I would say that long term stress predominantly applies more to women than men. The caring for relatives normally falls to the female more than the male. Malesalso suffer stress but more often financial which also bears down on one over a long period. Just a theory.
Might turn out to be one of those phenotypes there. I'm sur eI've seen a study which half the people were male and half female and that is not really representative odf the disease as we know women are more likely to be affected than men. My hunch, totally without any evidence base and purely anecdotal, is that sometimes men are often (wrongly) diagnosed with PMR when it's actually more like a type of shorter lasting inflammatory arthritis. Not all cases of course, but I have come a cross a few cases where they say have one stiff shoulder or knee or neck and are prescribed Pred for PMR but it goes away after about 6 months. PMR is very difficult to diagnose conclusively and so I'm sure some mistakes are made.
huh? I wasn't meaning you, you are unfortunatey a long-time PMRer, but hopefully now seeing light at the end of the tunnel. A friends dad supposedly had PMR because he had a stiff neck. Luckily he got through it very quickly and so could never understand why I was making 'such a meal of PMR' which to him was just a minor inconvenience for a short time
I think that's the wrong way round tangocharlie. Logically you probably suffered spinal fractures as a result of the muscular contractions like I have. That seems to be the result of muscle starved of oxygen. Pred. has made you , like me, prone to osteoporosis. the weakened , friable bone is therefore more likely to suffer through the contractions.
The ROS nurses told me spasms are a classic indicator of fractures. Due to internal bleeding the body tries to protect itself from further damage. That's all I know I'm afraid
Yes but if you think on it that is vague confusing cause and effect. If your bone structure is compromised as in osteoporotic, then it is more likely to fracture. Spasms are quite severe and direct loaders of bone being strongly attached. The very abrupt action is likely to apply great force. A fall could have the same effect. My spine developed a curvature due to spasming muscle and along with reducing my height by 3" it has fractured in that region. Due to pred. I also have osteoporosis.
As for "Due to internal bleeding the body tries to protect itself from further damage." This sounds like gobbledegook. Perhaps PMRpro can educate me. Why should fractures in the spine be a further damage preventative from internal bleeding?? doesn't make sense to me tangocharlie.
Sounds wooly to me PMRpro. Why would muscles spasm. from bleeding. Don't think I know enough. This is a neuro muscular specialists area. My back muscles definitely contracted with PMR but not through bleeding. I wouldn't have called it a spasm, more like a constant contraction.
I can educate you. I tried to take a picture of the ROS book but it won't upload so here is an extract from page 93 of All about osteoporosis and bone health: "Often during a fracture, blood vessels in the bone are torn and bleed, and back muscles can go into spasm as they try and hold the broken bone together". I assume as it is a published book from the experts it is fact-checked and therefore not Gobbledegook
thank you both. That makes sense to me.. My recent rheumy report says...beta-crosslaps breakdown markers decreased to 292 from baseline of 693U/L. PINP bone markers have increased to 253 from baseline of 37U/L. Both are very impressive results apparently. I can only hope that is a positive in regards to osteoporosis as my spine showed several fractured vertebrae. No idea myself.
I've asked my rheumie if they will do some kind of bone markers to see if the Romosozumab is working but they say it's not done routinely. To me it seems a useful thing to do so I'm puzzled. They say they know it works from the trials/studies but I say real life may be different. I thought as it's a relatively new drug they'd be interested in us real guinea pigs.
They don't seem to understand that we are not only concerned but also interested in how our bodies work and understand. At the beginning I got the standard we know best response and it was clear they didn't think it worth their time to explain except in the most basic sense. I made it clear that I wanted to know more and over time they have gradually relented. In all honesty it isn't possible for them to go through everything as the permutations of many drugs and their interaction is not possible to predict.
I hope you stay well. I think I’ve been on it so lng as I was left to self manage and didn’t have any idea about pred. I am looking at a dose now that will manage the PMR and stick at that for now.
After five years of pmr my GP decided my case was atypical and referred me to the local hospital. I am lucky to be with an understanding group of rheumatologists. At my last visit I was told that I would probably not now get off pred but he would like me to get below 5mg if possible. I'm not sure why, it seems to be a number they've pulled out of the air. My body fights back below 5 and QOL is greatly reduced.He had heard of the charity and had heard good things about the forum. He knew about Sarah Mackie's work and was impressed that we contributed to her research and that of others
I asked why the two year myth still exists with GPs. All he could suggest was that new research takes a long time to be published and then the GP has to be interested enough and have the time to read it. Most rely on what they were taught years ago. He had no explanation for why it still seemed to be in their training.
Good post tangocharlie, we've all been wondering this for years
Don't I know, the pokey flat I started out with in Brixton in the 80s that I sold in '92 is worth far more than my penthouse in Leeds. Shoulda wouldha couldha Marge as Homer Simpson says. Ah well, we still have the best countryside in England on our doorstep
very true unless like me you moved north from the south. I do have the option to return should I wish, but I much prefer the scenery and the people. That's a general observation as I do have many wonderful friends down south.
London is for the young and affluent. It's never ending pace is manic. There's also a paranoid element to its life. It's impersonal and frantic. There's a lack of trust and self isolation in social connection on the street. For the older and affluent it's also a cultural hotbed. I missed buying a wharf in docklands by two years. At one time they could be bought for a song. No one wanted them. I wanted to establish my designer/maker furniture business there. Would have been great for timber importation. The banks and other developer interests beat me to it. Developers had gated off the wharfs into them and us. Exclusive ghettos from the poorer east enders. So glad we missed out. It's only got worse a hundred fold since then.
I've just had an aha moment. Rheumatologists very rarely see cases of PMR, apart from few of us who kicked up a fuss and asked for a referral after their PMR hadn't gone away in the promised text book 2 years (mine was 3.5 years in at that point and I was stuck on 5mg Pred). They see GCA patients, but they have a different journey. They don't (usually) get the return of stiffness etc when they reduce the steroids, and maybe (I don't know) it is nearer a 2 year path? The massive dose of steroids initially puts the GCA into level 1 remission and then it's a smoother taper down than with PMR which can be more volatile and flare easily. So, if rheumatolgists don't see many cases of PMR apart from a few stubborn or refractory cases like me who have managed to get a referral from their GP, we are pretty invisible. So they think everybody else has managed fine and their PMR has just gone away and so the myths continue.
Even GCA tends to be more like 4 years, plus or minus. But yes - we have thought that for a while. And with some rheumies the patients vote with their feet and refuse to go back if it is suggested.
Guess I'm lucky in a way then that having a rubbish rheumie appointment in the beginning brought out the fighting spirit in me, I thought - I'm not putting up wth this cr@p! It's draining though, the constant battle against 'the system'
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Tapering Prednisone
The Lighter Side of PMR - 'MB, What Do You Think About This One?' Reply to JoanJo - and on the Paradoxical Journey of Steroid tapering ;-) 
tapering
Tapering steroids from 12.5mg. 
Tapering after a flare 
