In reply to another post, PMRpro has written "PMR only goes away in under 2 years for a third of patients". Is there any way of knowing whether one falls into that fortunate category? I was diagnosed with classic symptom and very clear blood markers (aged 70 and otherwise pretty fit) in mid-April this year and have successfully tapered 15 - 12.5 - 11.25 - 10 - 9.5 - 9, staying at each new dose for 3 weeks. I have had absolutely no return of symptoms, nor any severe Pred side-effects apart from some foot oedema and regular insomnia. The initial weight-loss caused by the PMR has stayed off and I feel good - pain-free, flexible, no deathly fatigue and doing all the housework, gardening, social activities and exercising that I used to do. I suspect my initial PMR symptoms were due to either (or both) of a highly stressful period in February/March and an ill-advised shingles vaccination.
So my question is - am I one of the lucky ones and can I risk reducing more quickly? I actually feel a bit of a fraud, claiming to have PMR and swallowing all this Pred. At 0.5 reductions every 3 weeks, it will take me a further year to get to 0.
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Who can tell if you are one of those who will have a relatively stress free journey? You may be one of the lucky ones but I wouldnt want to taper faster just prove it. I have also been able to reduce from 15mg to 9.5 without any flares or set backs and hopefully this will continue. All you can do is continue to taper slowly. Once under 10mg you need to reduce slower anyway. As pmrpro and Dorsetlady both tell us, this isn't a race to get to zero but a journey to find the minimum dose that still manages the symptoms of pmr. As you have done so well what does it matter if it takes another year? Good luck. YBB
If things are going well, then just celebrate that. I wouldn't be inclined to try and go faster - why rock the boat when everything is good?
You have yet to drop below the physiological dose of 7.5mg - you may find you stutter a bit then - some do, some don't. Hope you are one of the latter.
Thank you Yellowbluebell and DorsetLady for your replies. Yes, I know I should count my blessings when so many on this forum have a much harder journey than I have had up to now. I suppose I just hate the bathroom pharmacy my GP insists on, not to mention the restrictions as to what time of day to take all the tablets. Previously, I had been on the following, without problems, for several years - Levothyroxine, Losartan, Atorvastatin and Premique Low-dose HRT, all taken first thing in the morning. Now I have to add (according to my GP) calcium/Vit D, Alendronic Acid, Omeprazole, and (according to forum members) Vit K2. I also take co-enzyme Q10 and an OTC anti-histamine sleep aid (Boots Sleepeaze) about twice a week. It all adds up to a lot of pills, possibly with adverse interactions. So, while I have reluctantly accepted that I have inherent high BP, high LDL, borderline Diabetes 2, low thyroid activity, all of which require medication (as well as lifestyle and diet changes), I do worry about adding yet more, possibly unnecessary, drugs to the mix.
The majority of your morning tablets can be taken with Pred - exceptions - VItD/Calcium (leave at least 2 hours) and Omeprazole (1/2 hour before food).
I took AA on a Sunday morning - then had shower or sat down and read emails before breakfast and tablets.
You may think, as you aren’t having any problems, that Pred and associated meds are unnecessary. As someone who lost sight in one eye prior to diagnosis - and had other one saved by Pred, I obviously don’t think it unnecessary.
But do check if you actually need AA, request a DEXA scan to find out. Most people don’t need it.
It just a matter of getting into a slightly new routine with your tablets.
Have you had a dexascan? If you are on HRT there is a very high likelihood you don't need AA and only a dexascan will show. I didn't after 13 years on HRT - and there are some doctors who use HRT as bone protection. My bone density had barely moved in over 7 years on pred.
And will he give you enteric coated pred (I assume you are in the UK)? Then you wouldn't need the omeprazole which itself is even more likely to lead to bone density loss than the pred.
And remind him that polypharmacy is a major cause of hospitalisation, especially in older patients...
I echo PMRpro on your bones. I have been on HRT since I was 32 and my bones are at 97%, even after 5 years of pred (high doses) for GCA. You need that Dexa Scan
You won't know until it happens...that is you taper off the pred and PMR stays away. Please bear in mind that too fast of a reduction is the best indicator of relapse. I went to 8mg in a similar time to you but flared and my numbers were higher than at diagnosis. I would rather stay at a low dose (currently 6mg) for a long time rather than attempt 5mg again unsuccessfully and end up at 15mg for another 2 years tapering. I too take lots of meds. Don't like it but I see why they are on my list. I did dump a statin this year after 18years with drs blessing
I had the same experience as you did and my doctor said l should stay at 6 and not to try to get to 5 1/2 again. I have tried 3 times on the super slow taper and was lucky I only had to go back to 7 but she gave me Celebrex for 10 days to get rid of the inflammation.So now I am on the slow taper to get to 6 again.She is happy for me to stay at 6 and not flare.
The rheumy say in his experience getting to 5mg is very difficult for patients. I have been at 6mg since sept with a couple of attempts and am more than ok taking less than "natural" dose.
Thank you again for the replies. I suppose I will just have to see what happens as I taper down further. For now, I will stick to dropping 0.5 every 2-3 weeks - slow but sure maybe? I will pay especial attention once I get to (or below) 7mg.
Well I've had PMR for over ten years....I've managed to get down to 5mg and stay
there for a long time, thought this is good. Doctor ok with 5mg dont take AA but just calcium. Doing ok I thought, doing most daily things well and exercising 4 times a week and then BAME!!!!!.... last week I felt wretched couldn't work it out, was really unwell. I suppose because I hadn't had an attack for maybe 12 months, thought 5mg is good for me. It didn't occur to me that it was the dreaded PMR.... up to 7mg, then within two days back on the straight and narrow. Going to taper real slow and maybe stick at 6mg.......
Sorry you have had a flare but always good to hear that someone is able to have a good quality of life with long term use. I am just going into year 4 and at 6mg. Fingers crossed the 6mg sticks and no more flares. It can show its teeth at anytime can't it. 🌻
It's certainly not to be underestimated that's for sure. It's a another learning curve with this dreaded PMR. I do hope that from my shared experience people that have the PMR do take note, it's not to be messed with. Here endeth the preaching!!!!
I'm one of the lucky ones! (That's if I ever had PMR in the first place!) I started on 15mg pred on 22 July last year. Like you, I felt much better very quickly, even when reducing pred. I went from 15mg (4 wks) to 12.5mg (4wks), then 10mg (2wks); then I reduced by 0.5mg every couple of weeks, got to 0 early in March. I had no return of symptoms when I was reducing - if I had, I would have stopped or gone back up.
Everything has been fine since... fingers crossed! Although I do get occasional stiffness in my hands during the night (but perhaps that's due to crossing my fingers so much! 🤣).
I did want to ask you when you described your taper, in another thread a couple of weeks ago, if you thought it was PMR. I didn't want to upset you by asking as I know what it's like to be ill and struggle to get a label for it and then treatment for it. I hope it was PMR and you are lucky that the treatment worked and I hope you are free of it forever. 🤓
Oh, Poopadoop, I wouldn't have been upset to be asked that! Whatever it was, it responded quickly to pred, and with blood tests, it did seem to point to PMR. Who knows?! I realise that if it was PMR, it could well come back, but hey-ho, at least I've had nearly 4 months pred-free.
Just on that, Is there something else that can show inflammation markers that responds to pred? I was always under the impression that if the markers are up (or even normal), the symptoms are there, and it responds almost immediately to pred, then it was always PMR. The immediate pred response was the giveaway. Is there another autoimmune that responds so quickly to pred?
Not that I know of - that's why it's such a mystery to me - was it, or wasn't it PMR? If not, then what?!
I'm very aware that if it was PMR then it could come back. I'm trying not to get paranoid about every twinge I feel... and there are many twinges at my age. 😁😂
I hear you loud and clear. I have those twinges now two..8 weeks off the pred after 2 years.....but see my response to PMRPro below....would RA respond so well to Pred? I guess i’ll never be sure what I have either ..RA or PMR “left over” or flare... but I sure don’t want another drug if I don’t need it and he certainly doesn’t want me back on the pred, he wants me on methotrexate. It’s the lesser of two evils apparently.
Early LORA (late onset RA) with polymyalgic onset can mimic PMR in almost every way. And low/moderate dose can be used to manage it - so a high dose MIGHT well produce a fairly dramatic effect.
So you mean it could have been RA all along, managed initially by the 50mg pred? I’ve never been pain free, just always stayed on the level of pred that managed the pain at a tolerable level as I reduced. The pain level recently has kicked up a notch I have to say, so something is “flareing”, but it’s the pain from shoulder to elbow that is causing the biggest grief.
The speedy response to pred is not conclusive - just another brick in the wall of evidence. It is part of the reason a moderate dose should be used - that is a characterisitic of PMR. Using high doses confuses the issue as other things will repond too. For some people 15mg may not be enough - but that doesn't mean it isn't PMR.
The inflammation markers are very non-specific, all sorts of things will increase them and some may improve on pred.
Thank PMRPro and MhairiP. I remember on my initial diagnosis of both PMR/GCA I had all and every symptom of both, as well as high CRP and ESR levels, though the biopsy was negative...mainly because I’d been on 50mg pred for 6 weeks before I saw the rheumatologist and it was done. He never saw me at my worst, because the pred worked wonderfully well within the first 8 hours. Two years later and off the pred for the last 8 weeks, he thinks I have seronegative RA and wants me to start methotrexate. He was always suspicious that it wasn’t PMR and GCA...hence my confusion and reason for asking.
None at all. Bloods only and they had no RA factor. Diagnosed by where the pain is. I should say I did have an X-ray and ultrasound of a very painful left shoulder with pain radiating down to the elbow, shows tendinitis, bursitis, “painful impingement”and a small tear. No arthritis. I do agree I have an “ arthritis” in hands and possibly elbows and knees ...have had for years, ...but not convinced yet that it’s RA. GP understands I’m not on board with RA/MTX without more proof, he suspects OA not RA, and wants second opinion but it takes 3 months now to get in to a rheumatologist so he’s sending me to an orthopaedic surgeon, about 3 weeks wait, only for a diagnosis of either RA, OA, left over PMR and frozen shoulder. He’s hoping he does a CT or MRI for confirmation.
You should not think you are a fraud. There is no test for it; inflammatory markers are absent in about 20% of people. You are lucky, I hope; in Sept., I will be at the 3 year mark; I have only taken methylprednisone, declining methotrexate and Azanthopine. I am only now with sufficient energy to be in physical therapy. Hoping to get back into my old cross training at the gym, and off to a vacation.
My maternal grandmother had PMR/GCA; took herself to ER by bus; she was a stoic lady; lucky she had a sharp ER doc who diagnosed it in the ER; she had a high CRP. She was about 72 ; was on prednisone for maybe a little under 2 years, and lived independently( with my parents close by until 92. ) I remember after she started prednisone, she was on a ladder scrubbing her walls and needed to by some new, larger clothes; she had been a slender lady. And became slender again.
Now have a 85 yr. old 2nd cousin with autoimmune hepatitis; started on 60mg; never felt anything amiss; just routine check up. Never felt steroid withdrawal, got down to 4mg. , felt fine- but steroids up again by her Dr. when liver studies did not resolve to Dr's expectations. She still feels fine.
Now I have PMR; my daughter has RA , diagnosed 13 years ago shortly after giving birth to a very premature baby girl, now a lovely, smart, honors student. She is off all meds now. She still has the RA, but has worked her way away from meds. She is very physically active, but very sick when first diagnosed. All on my mother's side of family,
Hope is the best medicine as well as listening to your own body; we are all different. But I doubt there is a way to predict who will have a short course and who will have a long course except maybe by inflammatory markers, and even they don't always tell the truth. There is also the risk of relapse. I read in a scholarly article the average is 6 years, 3 months.
There is no way of predicting - people have looked it. And at 9mg that is still a pretty good dose, even I do well on 9mg - and I've had PMR for 15 years (sorry).
All the pred does is manage the symptoms while you wait for the inderlying autoimmune cause to burn out. Then you will get to zero pred. In the meantime youa re looking for the lowest dose that manages the symptoms. It might turn out to be 8.5mg, it may be 2mg, even 1mg. You will find out when you get there.
All this shows is that sensible tapering gets you there in relative comfort.
I have been on a low dose HRT for more years than I can remember & couldn’t tolerate AA, so stopped taking it after a few weeks about 7 years ago. Recent bone scan was deemed very good for my age (68). Also take my vit D & K2 with evening meal. Good luck with the continuing slow taper. Would love to get rid of the Omeprazole but seem to get acid reflux if I don’t take it 😬
I hoped the same. Diagnosed at 51. Started at lower dose of 15mg. Easy tapering with no flares. Then I got to lower doses 2-4 mg and could feel the stiffness off and on. Fast forward 6 years, was still between 2-4mg when I developed GCA. One can not predict where the journey will take us.
Diagnosed 9 months ago. Have tapered to 5mg from 20 mg. As the knowledgeable ones will tell you, it becomes more difficult the lower you go as the adrenal glands have to start working again. At your dosage the Prednisone is doing the job for them, I believe. I'm sure that those with more experience and information will tell you.
Your not the only one that feels like a fraud!! I too was diagnosed at age 55 in April 2019 and down to 10 mg of Pred. I am to taper down 1mg every 4 weeks until I get to 1 mg..... then on that for a year or so! I have lost all the extra pounds I gained having kids and such and have kept it off. This is the best I have felt in years!!! No relapse.... no pain... no issues. It’s weird to say I have PMR.... so yes, I guess we are one of the lucky ones. And to your question.... I would not reduce any quicker. As I’ve reread many many times... slow and steady. Don’t be in a hurry and enjoy your journey!!! Cheers!
I suspect that we lucky ones who have easy journeys tapering down through Pred simply don't write on this forum very much. I feel deeply sorry for those who encounter problems or flares, or who have multiple other heath and emotional problems to deal with. I certainly count my blessings. And I have a cautious and loving OH who insists that I go slowly...……
I am also one of the people who got PMR (4 days!) after a shingles shot. Went away after a year of prednisone. Nine years later, got it again. Jeeze, hope I don’t jinx myself by saying this, but this time I got it inDecember 2018, started 10 mg prednisone and methotrexate. I’ve been taking the methotrexate semi-regularly, weaning down before MD said I could, and I’m on 3.5 prednisone currently. I have some new pain in my right shoulder, but I think it’s impingement syndrome, gone with 1 ibuprofen.
I have been pretty active with heavy gardening but not up to my pre PMR level. I’m 70.
I’m not trying to be bragging, just putting out an additional scenario.
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