I was diagnosed just after the start of the pandemic. It was lockdown = pandemonium. All the same it sticks in my mind that all I was told about Pred was when to take it and to reduce.. Really, they seemed most concerned about alendronic acid and how I must sit upright. Do people risk death if they lie down? On the subject of potentially perishing from absence of steroid they were silent. Therefore all I know I have found out myself. I wasn’t given a steroid card by either hospital or GP. Therefore it seems to me entirely possible there may be patients in the wider world, outside this forum, who for instance actually do not know they cannot abruptly stop taking Pred and so would not worry about a few days’ delay? That is a rather worrying thought. If for instance your PMR is well controlled and doesn’t really bother you and you have a busy life, would you actually dig into it all? The NHS site says 1 in every 1200 people develop PMR each year., which I make 50,000 in 60 million (rough population of the UK). That’s 150,000 in the three years of the pandemic. How informed were all these people by their doctors? I am trying to assess the gravity of what has just happened to me and concluding it is only not potentially grave, pun intended, because I have my eye on the ball. It is a near-miss.
(A ‘near miss’ is an adverse incident that had the potential to result in harm but did not do so.2
Being open and honest with patients in your care, and those close to them, when things go wrong - GMC (gmc-uk.org))
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Did you have a Dexascan to check your bone density before taking the Alendronic acid? You may not actually need it if you do not have osteoporosis. There is quite a lot about it on this forum.
No DEXA and don't take it. I pretty much reckoned that on a litre of milk a day with nails as hard as diamonds it was necessary for people with a different diet.
In that case why are you taking Alendronic Acid if you think you have good bone density? Dexascans are not tablets they are an xray to check your bone density.
Yes. Sorry again. In April-May 2020 I was two weeks in hospital followed by two weeks in a rehab home. During those four weeks I was given Pred, AA, a calcium and vit D tab and Omeprazole from the drugs trolley, all at once by the way. I've seen some posts here about people taking their Pred separately from the Omeprazole and so on. Rightly or wrongly, the nurses didn't worry about that. I only take Pred.
That happened to a friend of mine, when in hospital in the UK. She was lying flat every time she took AA and was in hospital for some months. Obviously medical staff aren't briefed on when/how to take tablets/medicine, or at least not in that particular hospital. I didn/t know about her experience until much later....
Omg! Makes me shudder. Just tick box prescribing..Welcome to the forum, you'll find lots of good advice and info here. Well done for researching yourself so far..
Once I got my great Rheumatologist and found this forum, I began actively managing PMR. I encountered ignorance of the finer detail at primary care level especially the potential impact of tapering on the Adrenal system.
My wonderful GP was very informed about PMR and treatment as one of his colleagues had it. He shared a lot of information about pred, tapering, taking calcium and vitamin D, monthly bloodwork and CRP/ESR. He ordered a baseline bone scan and warned me about GCA symptoms advising me to go to our local hospital ER dept if they emerged. We also briefly discussed potential side effects of pred, I’m sure because I was so hesitant to try it so he didn’t go into much detail for fear I would flat out refuse to take it, As it was, I only agreed to try a 7-day trial pack of pred, but it worked so well I agreed to an ongoing prescription.
I also made an effort to learn all I could about PMR and finding HU was a blessing. I’ve learned so much on this forum.
Of note, my first (and former) rheumatologist did not provide any new or helpful information…rather they just caused stress and confusion. Just goes to show that specialists are not always “experts” compared to how the patient is an expert in their own body, symptoms, etc.
The emphasis on the AA is because there were patients developing Barrett's oesophagus which is a precursor of oesophageal cancer if ignored. It is asserted it ONLY happened in patients who weren't adhering exactly to the dosing instructions and either not taking it with enough plain tap water or not remaining upright after taking it to reduce the risk of reflux into the oesophagus. Hence the big "thing" is the AA,
Most pharmacists will advise patients about not stopping pred suddenly but a lot of doctors don't think about it as they mainly use pred for short term management of chest problems where it is less of a problem - patients may take 30/40mg a day for 10 days and stop, which is fine, So they may not be aware that taking a lower dose for longer suppresses adrenal function.
The situation during Covid leading to diagnoses being made without a physical examination and even no f2f appointment has led to even more incorrect diagnoses - and even fewer seeing rheumatologists. Now there is a massive backlog and PMR is perceived as a benign and short-lived illness which is easily managed with pred so it is paid next to no attention. It is none of those things and in many ways we are worse of than we were 10 years ago.
I was an in-pt and thoroughly examined, including MRI. Think I was diagnosed by a process of exclusion by someone I now understand to be a genius. I think the idea of PMR came from the registrar and I hope she goes far! I was actually in a renal bed, but that may be just because having come in via A+E it was the only bed going. So the rheumatologist popped by and told me they thought I had PMR and would be started on Pred. She was lovely, but popped is the word, maybe five minutes. There was nothing benign about my condition at diagnosis and I shall wear my Awareness T-shirt with pride.
I have GCA and no, I wasn’t told anything about my illness. I found everything out on my own. The rheumatologist kept asking me about how my eyesight was but never told me why. I shook constantly on prednisone and every doctor I asked told me they didn’t know why. In fact every side effect I had from prednisone I was constantly told that it’s not from pred or GCA. When I started Actemra I was never told about it causing high cholesterol. I found out on several web sites that I need to have my cholesterol checked after several months. I’m the one who asked my doctor if I could take a lipid test. He said sure. Thank god I did. My cholesterol was dangerously high. I felt like a walking stroke or heart attack. He then told me to see my regular doctor which I did.
My rheumatologist is extremely kind and understanding of how I feel. He calls back immediately if I call him but doesn’t explain anything.
I have found a lot from this website. I’ve tried to read a lot of things online but info is sketchy. I’m on a Facebook site for GCA but many on there are know it alls who don’t know anything
Crikey, thank goodness you got your cholesterol checked indeed. That must have been scary. Hope it's back down at a safe level by now. We just do have to look out for ourselves, don't we.
I knew nothing about PMR when I was diagnosed over the telephone by the GP. All I was told was that I would need to take prednisolone and then AA to protect the bones. I had a dexa scan but not understanding the results took AA anyway. I have stopped at the moment to have a rest from it.
Anything else I have learned has been from this site. At one point I asked about an emergency card to be told she didn't think I needed one. Then she disappeared from the practice for a while and whoever I spoke to next put one in the post that day. I've never been offered calcium or vitamin D - I do take Vit D but not calcium. I asked whether I should consume more dairy (I only eat an occasional piece of cheese) but was told there was no need.
So, no, not told anything at all, really. Thank heavens for the people who give their time on this site - don't know where I'd be without it.
After 3 years I've just got my card - by joining PMRGCAUK. Have to say it has serious design flaws like the narrow column for the name of the drug but it does communicate the basics. though if I were run over or something, would they find it in my handbag? I think people here have said for that reason they have bracelets or neckchains? It really doesn't quite wash, does it. Thinking of the meme PMRPro just posted of a doc raising his eyebrows at patient for thinking a Google search equates with his degree. Then do they want us to know nothing? if they don't tell us anything we're forced to try and find out for ourselves.
If I hadn't used Google to input my symptoms, I'd be blind or even dead by now. I'd seen the GP several times over 4 weeks as the symptoms worsened, was told I had a virus and to take paracetamol. I was almost on my knees when I found GCA pop up as top of the search results for all of my symptoms, took myself off to A &E and had the Pred by that afternoon. But like you, the information from the clinicians was not forthcoming at all and once again Google found me this site which has been a godsend. The help has been amazing and I love you all! 🤗
Also diagnosed three years ago with PMR.Just told to take steroids Aa and Calci D.Had bad reaction to Aa.Told to stop taking it but no alternative offered. Asked for Dexa scan told I didnt need one !!Recently had telephone call from surgery saying I should be steroid free by now.Im down to 3 mg. Good job there is this site and lovely people with good advice. Thanks🌺🌺
No. I didn't even know pred wasn't a cure. As first tapers went so well I thought I'd be done and dusted in three months! Here I am, nearly eight years later....
Didn't know not to take pred with calcium supplement.
Not told anything about GCA, got that from my own reading, and went to eye doctor where I learned no GCA, but pred-induced elevated ocular pressure.
On the other hand I was so grateful for her accurate diagnosis after so long without one from former doctor, and she was very good about allowing me to taper at my own rate.
My rheumatologist has been OK most of the time but does like to be boss! He says I can just stop taking my 6.5mg prednisolone because my ESR and CRP are so low it means I haven't got PMR when in reality it's probably the pred that's controlling it.
He says I can just stop taking my 6.5mg prednisolone because my ESR and CRP are so low it means I haven't got PMR when in reality it's probably the pred that's controlling it.
Obviously knows nothing about adrenals and Pred either!
I'm aghast at how ignorant and seemingly uncaring some doctors are from posts here. Such a pity - they presumably went into medicine to help people. Maybe they are just tired of it. Surely the youngsters are still keen?I remember when I was ill as a child , the gp called in a couple of times to check on me. Not likely nowadays!
I think far too many are so overworked - and now paid a lot less effectively than when they decided to do medicine, I know it is a vocation - but they are keen enough to charge students for taking up a vocation and something has to pay the bills.
Last week, I went to the support group meeting in Oxford run by the rheumatology department there. The department provided useful information on PMR and GCA. They were collecting information about what people were told when they were diagnosed, which for some people with PMR was very little. I suggested the department produce a leaflet for doctors to give newly diagnosed patients and that they recommend Kate Gilbert’s book.
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