I have had pmr for 8 years. When I was first diagnosed, the dr. Told me it will last about 2 years on average. I have taken about 15 mg of prednisone most of that time. I have tried various dmards to try and decrease the pred. But nothing works. At this appointment I asked her if she has any patients that have gone into remission and remained there? She said no. In all the years of her practice she has no one who has gone into total remission. Most of her patients have needed to stay on a low dose of pred. Or methotrexate, and will probably be on it for the rest of their lives.
Sure is a turn around in her thinking. She also said a lot of her patients can not go to a low dose level of pred. This office has never pressured me to decrease my pred, though they do encourage it and offer ways to help.
Good luck to all those who’s struggle with this disease.🌻🍀🙂
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Linny3
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Why on earth can these doctors not tell the truth and get together to publish something that will bring this to the attention of their peers? Sarah Mackie talks about the "2 year PMR myth" and my own rheumy here in Italy never mentions being off quickly - but too many believe the tripe that it is a short, self-limiting, minor and simple disorder and persist in browbeating the patients who struggle as not trying hard enough or LIKING being on pred.
But you are in the USA - is there no chance of Actemra or Kevzara?
""I realized we were lacking common sense in oncology," said Gyawali"
Not just in oncology - a bit of common gumption in PMR wouldn't come amiss! Stop treating patients on pred as hardened drug seekers for a start and understand that it is Quality of Life that is the A&O, PMR is a seriously disabling illness.
Ah the PMR Fantasy, which can turn into a nightmare for us patients. So many elements, the 15 mg starting-dose, the 46-week tapering schedule, nothing close to two years! Assuming they didn't blindfold themselves and choose numbers at random (or is that optimistic) all this stuff must have originated with some person/persons/group, something like once upon a So-and-so's team at Somewhere published it in a paper bizarrely taken as the gold standard - do you know who?
Someone - not me with my present energy levels - could write a short satirical novel about doctors who made up a disease and convinced other doctors it existed. They were particularly exact about how to treat it. Actually I think it's been done, but a darker tale of docs who invented an ailment and persuaded people to pay them thousands to cure it.
This sounds, from all that I have read on this forum, like progress. I must admit my rheumatologist told me from the start last year,that I would probably be on prednisolone for ever, and I didn't really believe him. Thanks to PMRPro and DorsetLady and many others on this site, I'm better informed now!
My problem is the GP surgery, the doctors seem ok, although I've never seen one, but the 'Clinicians' or Assistant Physicians are maddening. Having been advised to stay on 5mg per day since April by the consultant, I requested 5mg tablets to be reinstated as a repeat prescription, referred them to the April letter from the consultant and was told by text that I should have been taking 1mg per day until 7th July. I've no idea what they expected me to do, and there's no way of speaking to these people or answering their texts. I have had to pester them with daily EConsult messages to get another month's supply.
And again with thanks to PMRPro, DorsetLady et al, I was able, when someone eventually phoned me, to put her straight very firmly, feeling very confident of my ground. Thank you for empowering me!
Sorry about this, but I've been absolutely infuriated for a fortnight!
Am I being too Machiavellian here, but I wonder if a lot of people wouldn't start on pred if they realised at the outset that they might never get off it? So they tell you a porkie pie and give you false hope to get you started? Or is that when we are desperately ill and in pain, we just hope that what we are offered will give some relief. I was adamant that I would not go on pred in November. By the following February, I was on my hands and knees (well, I would have been if I could have got down there) begging for a prescription. The biggest downside for me from the conflicting info that I got at first and not getting the fully story is that it undermined my confidence in my health carers and it has made me rely on my own research abilities. The biggest porkie of all, was telling me that you categorically cannot get PMR before age 50. Well, that's plainly not true, is it? And it doesn't make sense that so many docs are in a big rush to give you pred and then a big rush to get you off it, knowing full well that it only relieves the symptoms and does not tackle the disease. It's not fair to pull the rug out from under the patient's feet like that. I wonder if that is where the error in judgement stems from with some docs, that they view the symptoms of PMR as the disease, rather than the underlying cause? It does seem to be a common theme in modern medicine to treat the symptoms, rather than tackle the root cause of illness. Gosh, I am grumpy today, take the rant to be a measure of my current disenchantment and frustration and maybe partly my malingering adrenals.
Managing the symptoms is the only option for many things - especially anything autoimmune . Unfortunately too many doctors just don't know or understand the principles of the disease.
Am I being too Machiavellian here, but I wonder if a lot of people wouldn't start on pred if they realised at the outset that they might never get off it?
Some don’t have a choice - or at least if they do, it’s Hobson’ s choice….when my GCA was finally diagnosed, the consultant ophthalmologist told me, at least 2 years on Pred, probably nearer 4 years, maybe for ever. Spot on he was… but then I always found him more sensible than the Rheumy I encountered.. 😊
this is exactly one of the reasons I was against the Pred. My rheumatologist almost sat on me until I agreed to take it, which I didn’t. Imagine my surprise last week when I saw him and we were discussing alternatives, when he said, “The trouble with the Pred is that people get stuck on it and can’t get off it”! Exactly!
Your situation and mine are worlds apart. I know you cannot take steroids for all sorts of reasons, and I would never insist you or anyone else has to take them.
However, I had no choice, I had already lost sight in one eye and in danger of losing the other but for Pred.
Fortunately for me, [and I do know that] I had very little in the side effect line apart from the obvious, certainly no lasting health issues with Pred…and no great problem getting off it.
Obviously sight never returned, but tbh it’s not a big deal most of the time.
Yes, that's very true about no choice, which is why I phrased it that way. GCA must be awful and I really hope I don't get it either.
I really liked the opthalmologist that I saw at the hospital too. She spent a lot of time with me, answering all my questions. I felt so much better about the whole thing after I had spoken to her and got some sensible answers. Ironically, It was the first occasion that I was able to finally concede that I really did have PMR and that it wasn't just some terrible mistake. It was all making sense, at last. It underlined once again, the importance of docs actually listening to their patients.
That was in contrast to the rheumatologist, who told me that it sounded like I had PMR and that I would be on steroids for 18 months to 2 years, and that I was jolly lucky that I hadn't lost my eye sight. He made it sound like GCA was an inevitability and his manner scared me witless about the whole thing. My friend took a couple of hours talking me down after I came off the phone as I was so upset. Such mixed messages and no need to scare someone who is already feeling confused and upset. Thank goodness I have a better idea of what is going on now. So when I had a bit of a rant earlier, that experience is still at the back of my mind.
Actually without the spectre of sight loss, from what I’ve read on here, I think GCA may be easier to deal with than PMR…or perhaps that was just my version …. or because it was way before the dreaded covid hit the NHS.
Not sure of how things work in US, and how easy it is to get an appointment with an ophthalmologist with your insurance.. and you do seem to have more specialists involved with a GCA diagnosis.
In the UK most people would see their local optometrist annually - or maybe 6 monthly, and if there was an issue, would then be referred to the ophthalmologist.
Because of my sight loss and diagnosis by the on-call Ophthamologist, I was under his department’s care for the first few months… but in UK, the usual specialist for GCA is a rheumatologist.
Believe me, I was in major denial for some time until I could barely move, could barely even manage to drive my car. When I got to that stage and a doctor actually diagnosed me I couldn't wait to take that first dose of pred. By then I didn't care whether pred would cure me in three months (which is what I thought would happen) or still be on a tiny dose by eight years (which is where I actually am).
So I'm bedbound in hospital, totally unable to stand, five days after starting Pred although I had stood and the pain had gone I couldn't stand to order and had to be moved with a hoist, so I was in screaming agony if I had to move to be washed or have the bed changed, so I couldn't go through with the MRI at the first attempt because of said screaming agony lying flat. What is this bogeyman not getting off it? I shouldn't have given a - one of those things and for that matter still don't if, I should be on some minute dose of Pred for the rest of my life.
Funny, but my Rheumy has said just the opposite. He told me that in his 40 years of practice, only one patient for PMR was on pred long term, that being 7 years. I am currently on 2.5 pred after almost 5 years, and am hoping he is correct and that I can eventually get to club zero.
On another note, I have a friend at the gym I frequent who is close to my age, who just got off of pred for his PMR after 4 years. He fells great and is again playing 18 holes of golf! Let’s all be optimistic!
One is left to ask how many patients he has had. It tends to be US rheumies who are insistent it NEVER lasts long - whereas European, non-native English speakers, are quite willing to admit not everyone is off pred in a short time.
My current GP is from UK but actually trained on the Continent, and he's very relaxed about my pred dosage. More than I am, because now that CRP is down to about 1 I feel I should be able to drop all pred but seem to be clinging to that last mg. Of course there is the adrenal thing to consider....
hi Manchild! Yes, I feel sure many people manage to eventually come off Pred. I am down to 0.50mgs after 2 years 3 months, yes it has been a rough ride, but I could not have managed the terrible pain I experienced, without it. Frankly I say thank you Predisolone. I have learned a lot about my life in the last 2 years or so. I am not the same person as I was prior to PMR, but if I felt that I was taking a low dose of Predisolone for the rest of my life, I wouldn’t care, after all ,I take blood pressure pills for the rest of my life, so what is the difference? Keep strong and smiling!
Male, 68 years old. Diagnosed with PMR 1 year ago. Literally hit me overnight like a ton of bricks. Had to crawl out of bed. Pain in both shoulders. Couldn’t reach above head. Weakness in both thighs. Standing from a seated position extremely difficult. Sound familiar? Primary care immediately diagnosed PMR. Rheumatologist concurred and started a low dose 7.0mg to see if I would respond. Thankfully relief was immediate. Maintained this dose for several months than began slow withdrawal. Now at 0.0 for 6 weeks and far so good. Definitely lucky and atypical but it can happen so there is hope. Remission with a possibility of return? Possibly. But every day is a gift.
When I was first diagnosed 9 years ago, even then they didn’t know what it was ailing me, thanks to a holiday cover young doctor realized it was PMR. I was also lead to believe it would be a couple of years, in the meantime take this 20mg of Pred a day. Which of course worked wonders, currently I’m on 5mg and spent the last 9 years with tapers, flares and so on. Without the extraordinary people on this site, I really don’t know how I would have managed. I live in hope that one day I will be free of Pred, but not optimistic of my chances. Good luck to you..
My rheumy (in US) was optimistic about my getting off pred completely, even tho I had both GCA and PMR. First doc I visited was primary care doc who immed put me on 30m pred due to symptoms of GCA - mainly weird scalp pain - and fear of damage to eyesight. He referred me to rheumy who ordered biopsy. Even tho I had biopsy while on pred it came back "conclusively" positive for GCA.
After biopsy rheumy upped pred to 60 m, but I was able to wean off it in 5 months. Started taking Actemra about 2 months after dx, and took it for almost 2 yrs, weaning off it slowly.
Have been off both pred and Actemra for over a yr. Rheumy was optimistic that I would stay in remission. He said if GCA or PMR did recur I could go back on actemra, no mention of pred. I know I have been fortunate, and have had very good doctors (rheumy participated in Actemra clinical study, before I was pt). Fingers crossed for the future!
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