Hello my learned fellow sufferers. I’m reading Kate Gilbert’s incredibly useful book on PMR. One quote that has struck me was the consultants quote “ If they still have it after 7 years , then it isn’t polymyalgia anymore.”
I was first diagnosed in 2014, now into my 8th year. Currently I’m down to 4mm to 5mm of Pred with varying degrees of stiffness, etc. I can never seem successfully to get below 4mm. My rheumatologist wants me to get below 4mm before submitting another blood sample to see if my body is producing Cortisol, etc.
Does anyone think I should even consider it’s no longer PMR? Just curious if long term symptoms are not that unusual.
Thanks
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I don’t remember that in Kate’s book. My own PMR morphed into GCA/LVV did he mean that, it’s quite common? I had the Cortisol test at 5 mgs of Pred and failed it but when I was tested at 3 mgs (Synacthen) it showed that my adrenals were capable of working.
Well, how long you have the symptoms of PMR may be a matter of luck, or there may be some underlying difference in the illness in cases that recover more quickly, in comparison with those that continue for years and years.
One consultant rheumatologist, who researches PMR, told me ‘if they still have it after seven years, then it isn’t polymyalgia any more’.
Certainly, it would seem to be essential that, rather than continue them on steroids indefinitely, doctors should have a fresh look at their cases after three years or so and satisfy themselves that the condition has not morphed into something else, such as late-onset rheumatoid arthritis. ‘Polymyalgic-onset rheumatoid arthritis’ is fairly commonly observed in rheumatology clinics[ 24]. Or maybe the problem is a kind of physical dependency on corticosteroids rather than the illness itself. PMRGCAuk often hears from patients who say that they have had PMR for many years, sometimes as long as ten years. As a layperson I have to question whether that diagnosis would still be sound if alternatives haven’t been looked at. Another question for which there does not seem to be a categorical answer yet is whether PMR can return after several years. Some experts say, “once it is gone, it is gone”, whereas others suspect that it may recur. Certainly, PMRGCAuk has a few members who are on their second bout of PMR. In the majority of cases though, it apparently does clear up entirely, although survivors may experience occasional ‘PMR days’ from time to time for years afterwards.”
My Psoriatic feet are flaring as always with good weather (why?). I have never shown them to (Sarah) my Rheumatologist . I just know I would collect another diagnosis (Psoriatic Arthritis ) and more drugs perhaps. This pre-dates PMR (2016) and GCA/ LVV (2018). I think sometimes we have to prompt further investigation ourselves.
I’ve heard that quite often and it does seem most rheumatologists think the same.I was diagnosed in 2012 and am still on 4 degs of pred. With me though OA was also ‘accompanied’ with the PMR, so - right from the beginning I found pain killers helped (which they evidently don’t if you only have PMR). Perhaps you have had something else travelling along with you as well!?!
I've not heard that suggested ever before and although I'm not a rheumatology expert, I personally don't believe that to be true as my father lived with PMR/GCA for the last eight years of his life.....in fact he was into his 9th year.
If he rushed a taper or over-exerted himself, his re-emerging symptoms remained the same throughout and steroids were the only treatment that would alleviate the pain/stiffness that would re-occur.
Once diagnosed, his illness consistently manifested with all the classic signs & symptoms, so if this had been initially mis-diagnosed and indeed wasn't PMR/GCA, then I'm hard-pushed to know what else it could have been!
Others more knowledgeable will correct me if I'm wrong, but I've always understood that PMR/GCA doesn't have a time limit and it takes as long as it takes to run it's course. For many it will indeed have the potential to diminish.....on average between 5-7yrs,,.... for a small percentage this will be sooner but for others this may go beyond 5-7yrs....as in my father's case.
I'm coming up to my 3rd year now, and I've learnt (and still learning more) about how to manage & understand both my condition and my medication. Being better educated on these aspects of my illness definitely contributes to making me more able to accept my life with PMR and live my life with PMR......however long that turns out to be.
These are just my own personal thoughts based on my own experience.....others may have knowledge that suggests differently and I'm sure will be along shortly to advise further if so.
At first when I was diagnosed in 2014, I looked up PMR and of course read the "it only last a couple of years" blurb, so I went merrily along swallowing Pred like smarties, or M&Ms over here. The instant relief was great. I never gave a thought of long term steroid drugs.
Why would I, it would be gone in a couple of years, we we know how that goes. On I go, taper-flare, taper flare, etc. The good thing I I have never had to take 200mm like I did to begin with, currently I fluctuate between 3-5mm. If the flare is not going away I go up to 10mm for a couple of days.
I should next do some research on what effect the low dosage has on my well being. I checked the symptoms GCA and I don't have them, so that's something.
I must just add that that's not to say there aren't other conditions that are very similar in their manifestation and therefore a potential for misdiagnosis could occur.
Because we're all individuals with our own unique 'health profile', determining a definitive diagnosis will differ from person to person.
I was "at" the Scottish charity zoom AGM on Friday afternoon for the talk by Prof Sarah Mackie - and one of the first things on her topics was "The 2 year myth". The top people in the field have heard what some of us have been saying for about 10 years now and looked at it - PMR is not the very simple, self-limiting disorder many of them think it is. At least a quarter of patients need pred for more than 4 years, and a small number need it for much longer. Another study found that half of patients need pred for more than 6 years.
Prof Mackie also told me afterwards that many rheumies don't really have a clue about PMR since they sometimes never see the patients at all and very often discharge them back to the GP and never really know the outcome - she had been speaking to one recently who claimed his taper approach always worked and she asked how he knew. He didn't, it was based on the fact he never say them again after they went back to the GP.
Funnily enough, the non-English speaking world of PMR have acknowledged that for much longer - my rheumy here in Italy who worked until fairly recently in Austria and also spent time at Southend with Dasgupta, said he has a fair number of patients on pred for as long as me but at much lower dose. There is a small but growing group of us on the forum who are well north of 10 years and I am approaching 18 years now since PMR symptoms started, on pred for nearly 13 years. I have repeatedly queried my rheumy whether it could be something else - if it is, there is no evidence. By defining features, it is still PMR, possibly with a h story of GCA/LVV that DID burn out. Christian is a world leader in the field too.
And because of this sample of rheumies - the old ideas about PMR are being challenged. Once the duration is challenged and proven - they will start to take it more seriously, it isn't a short-lived attack of rheumatics, it is far more complex than that. And, like Long Covid, will become an economic problem ahead.
Would be good if SM could get that message out to the wider world -sure she is doing her best, but still seems to be hitting a brick wall, or perhaps it’s a glass ceiling !
It would, perhaps be helpful if that type of talk could be published in the PMR GCA UK magazine.
When the support group I was with, we sent out the magazine to all the Rheumatologists in the North East. Asked members to take spare copies or pass their copy on to the GP's surgery. Whether that was productive or not, we had no way of knowing..................but assumed that if only 1% read the newsletter then that would be worth it.
Mind when I think back the way PMR & GCA treatment has improved over the past 15 years........slow but sure. I know we won't get cause or cure in my lifetime, but live in hope for the future.
It certainly is complex, as I'm finding out. I do so with so much information researched from this site. I think my doctors are taken back by how much I do know, not that it is ever enough. I know enough to be dangerous The communication from people like you and all the others on this site is invaluable. I learned far more on here than any of the medical profession were able to communicate., so as always, a big Thank You.
My Rheumy acknowledges that PMR lasts much longer than 2 years and has a few patients, like me, who have had it 6 years or more. I have also met one of his patients who has had PMR for over 15 years.
He also acknowledges that PMR may not be the only thing going on. It was him who finally listened to me and ordered mri scans which proved that I had nerve involvement with my spinal arthritis and he considers this together with the PMR when we discuss painkillers and prednisolone doses along with all the other arthritis I have. His view is that I do have PMR but he suspects a type of inflammatory arthritis as well because of the amount of damage I have.
I know he's a rarity and that I am lucky to have him and a compassionate gp.
It does seem a never ending cycle of taper, flare, taper, etc. I becoming more convinced that this condition will be with me for the rest of my days. You are lucky to have such a good rheumy, mine are beginning to wise up, so perhaps there is hope yet..
I am now 65 and was diagnosed when I was 50 with positive symptoms and blood tests. . Like you I am still up and down on pred. Symptoms of total fatigue, stiffness all over . Now on 2.5 mgs but thinking I will have to up to get quality of life for my tour of Scotland holiday. No positive blood result for yrs . Just had cortisol synatchen test as feeling so rough in the morning , good result. So now I have been told that PMR has probably gone , but now have fibromyalgia. And to come off the steroids. I believe these type of illnesses end up in a catch 22 situation. With neither the Dr or patient having any real idea about what’s occurring. All being reliant on blood test results and the time you have had symptoms. It’s a very lonely world in fatigue. It can destroy your friendships, frustrate yourself and worse your GP. I do hope this passes for you. There are people that have compleat recovery or long remissions.
It is remarkable how ones life change almost overnight with PMR. Before 2014 I hiked with friends every week, often 8-12 miles, hills didn't bother me at all, and I led from the front.
Now I can only manage 4=5 miles, and not too many hills, and I'm at the back.
I tried to conceal my condition, but I was really hanging on for grim death over the last couple of miles. In the end I fessed up, and explained I could no longer do those hikes.
They are kind enough to do easier hikes, and I noticed they appoint someone to stay with me, as I was often left behind when I just wanted to find a patch of grass and lie down. I felt like death. Now as I don't try to emulate a past life, who knows if I will ever be able to entertain a former life, not likely. Thank you for you reply!!
How true , I am just living with what the day brings , but fortunately if it’s a bad day I can sit back and relax . No mortgage, a caring husband . Feel blessed for that .
This post and the many replies resonate with my status particularly after my last rheumy visit this past week. Been on Prednisone for nearly 8 yrs and now down to 3mg which i can't seem to get below without a relapse of more symptoms. Even at 3 mg I have daily stiffness and soreness. My inflammation markers have been basically normal the last few years or slightly elevated and as such not such the rheumy really believes or understands that I still have symptoms which unfortunately are not going away. I even suggested increasing my prednisone dosage above 3mg but the rheumatologist would prefer i stay at 3mg since less side effects for long term usage she said. I asked about alternative meds but they did not recommend any at the low dose i am on which i am fine with. No mention of synacthen test etc. Recently had the onset of some headaches which may not be related and have been complaining for a year plus about pain and tingling in my feet which again may not be related and they suggested referral to a neurologist Frustrated by lack of understanding at the rheumatologist level as clearly my symptoms are indications of something going on.
Your symptoms are remarkably close to my own. I once got down to 2mm or Pred, it lasted about a week before the flares started back, that was a few years ago. Currently I'm on 4mm of Pred trying to get down to the 3.5mm so my Rheumy wants another blood test to see if my Adrenal is working. Late last year, it was working, a few weeks ago, it had diminished somewhat It seems to me we are going round in circles. Like you 8 years now, with no end in sight. Thank You for your reply, this site constantly uplifts me in hearing from fellow sufferers. On we go..
Yet again: Prof Dasgupta says he often keeps patients at 2-3mg longer term as it reduces the risk of relapse. For some that will be more than they need, for others not quite enough. I know that here my rheumy has a fair number of people on longterm pred - he isn't bothered,
If you are not on enough "maintenance" pred - the unmanaged inflammation will build up again - and you will end up needing a high dose. Being on 4 or 5 mg for a long time is far less risky than having to yoyo to higher doses ...
I too found that my original symptoms have never been as severe when I was first diagnosed. You have to wonder when you get down to 3mm of Pred, what exactly are they doing? I understand exactly where you are coming from. I have been trying to stop taking Pred for many years now, all to no avail. Thank You!
I am so similar. My original symptoms were severe. Now 7 years later I'm down to 4 mg and my symptoms are much more mild. But they won't go away! Every time I try to reduce to 3 mg or even 3.5 mg, I have to go back up to 4. It's frustrating, but I try to remind myself that at my age it's not that bad to have this mysterious but mild disease rather than something way more serious.
That’s almost exactly the same as me. I’m on 4mm, if the flare comes along I may go back to 5mm, then back to 4mm, etc. Like you as soon as I dip below that the symptoms increase again. It is very frustrating. Like you said, it could be worse, a lot worse..
I know what you mean, although I have to say, the pain has never been severe. It's the stiffness and fatigue that does me in. Sure I experience some pain in neck and shoulders, but I can live with that, the deadly fatigue is real handicap for me. Thank you for your reply!!
Good your adrenals seem to have kicked back in. At least it's a chance to stay off the pred if your other meds are helping you. Thanks for getting back to me.
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The communication from people like you and all the others on this site is invaluable. I learned far more on here than any of the medical profession were able to communicate., so as always, a big Thank You.
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