Ten years ago exactly I was eventually diagnosed with PMR. The journey from then to here is like most of us, up and down. I started with 20mgs of Pred, and immediatly felt great, even normal. Over the last 10 years I once got down to 3mgs Pred, then of course a flare occured and I went back up again.
I seem to veer between 5mg and up to 10mg, before tapering back down to 5mg. That 5mg seems to be the dose that keeps most of the symptoms at bay, not all of them, but I can function fairly normally, but not like my former hiking, biking self.
What I'm trying to say is, after 10 years I have resigned myself to I will never get rid of PMR, all the hope at the beginning with the it's a not a permanent disease and it goes away after 2-3 years is not true, well for some it may be. I suppose the good news is I have never had to go over 10mg since the initial diagnose, small mercies. I just wanted to share my story, and wondered how others have got on.
Thanks
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I certainly agree with you about the duration of PMR! At least you are usually lurking at a low dose. Have you tried a super slow taper, the "nearly stop" version of the dead slow method?
Definitely had acute symptoms in the spring of 2014 and was diagnosed June the following year. Finally 1st Feb, '24 took what *may* be last pred dose, but not holding breath. Have also come to wonder whether I actually had PMR-like symptoms much earlier because when I read that one of the key symptoms of PMR is "morning stiffness" I thought that was wrong, have even commented as such on the forums. I believed it was osteoarthritis (which I do have). But since coming off pred there's been no return of "morning stiffness" despite very obvious joint involvement at the moment. Does this mean that I may have had some sort of inflammatory thing, not necessarily PMR as such, going on since my 40s (PMR diagnosed aged 68)? In 2005 I went on a cruise and felt extremely well, aches and pains went away during that time, have very clear memory of this, age 58.
Morning HeronNS I can't get anyway near your ten years yet as I'm only coming up to four years, but I can resonate with your thoughts regarding OA. With hindsight, I'm fairly sure that a lot of my aches, pains and problems that I put down to my OA, which I definitely do have, was actually the beginnings of PMR.
hi, my diagnosis was in 2013. I anticipated my PMR would leave in a year or two. I’ve followed a pattern similar to yours, and it seems I do well with 5 mg pred. So here we are, travelers on the same road. Kind regards, j
Snap. I was diagnosed with PMR on our 55th Wedding Anniversary exactly 10 years ago, while we were on holiday! Today we celebrate our Diamond Anniversary. I have managed to get down to 3.5mg pred. 3 times but always have to return to 5mg. to be comfortable. I am so glad that pred. is here for us.
I got PMR in 2012 and on Pred since the end of that year. I had only ever got down to 8.5 mgs but never been able to stay there. I was mostly on 11mgs.
Much to my surprise, in January, a PET scan found no inflammation at all, suggesting the PMR has gone. Although I don't 100% believe it as I am still in quite a lot of pain. there are quite a few things that support this conclusion, especially that increasing Pred. does not help my pain at all anymore. Following my Rheumy's instructions, I am tapering slowly and so far, so good!
I wanted to post
this to give hope to any long timers out there. It is still possible for the PMR to go, even after all this time!
Interesting could have been me writing your post. Started approx 12 years ago, had scan told the same thing no inflammation. I still have fatigue and some pain, and heaviness, so conclusion is Fibromyalgia, I’m not convinced. Going to try lowering after Easter, what baffles me is when I lower I’m worse, how can it be Fibro if it dosen’t respond to pred! Did you have your scan at 8.5mg? Hope lowering keeps good for you.
But if you are on SOME pred the inflammation is being damped down - but the actual disease process can still be chugging away in the background, affecting body tissues and making you feel fluey. And if adrenal function isn't absolutely "normal" and running like a well oiled machine, that can also leave you feeling rubbish.
Yes, exactly so why do Rheumatologists go by scans not symptoms! There are probably a lot like me and Suzie1959 If when I lower which will be very slow and pain etc returns worse, I will be on the phone to Max!
Because I don't think they see it the same way. So many put all their trust in scans and lab results without using clinical skills like old-fashioned doctors used to have to. And so do vets - maybe they'd be more help!!
I was diagnosed with PMR 8 years ago, then GCA-LVV joined in 3 years later. 5mg seems to be my sweet dose. Over the years I've tapered to lower doses, but flared and have had to return to 5mg. Last year I stayed on 5mg for 6 months, then tapered eventually to 1.5mg, but the inflammation resurfaced. Currently back on 5mg for the past 2 months......
I can’t believe how heartened I am by your post and the responses! I’m sliding into year 8 at 4 1/2 mg., no signs of anything disappearing in the near future. 2 gps and a phys asst said they had never seen a case last more than 1 year. For me it’s the stiffness and soreness that is so debilitating…no golf or horseback riding for me (I never did either, just flabbergasted that some posters on here can do those kinds of activities.). I know 4 1/2 is ok, I know I can stay on it forever if need be, but like everyone else, I can dream, can’t it? That someday magically pmr will burn itself out and I once again will be Wonder Woman. Despite the fact that I’m now old(er).
"2 gps and a phys asst said they had never seen a case last more than 1 year"
They've led a sheltered life!! I haven't come across too many who were OFF pred in a year ... And I bet I have met a lot more cases than a PA has. And probably more than most GPs.
Just because they haven't seen it last more than 1 year - doesn't mean it doesnt. Their patients that did have longer probably moved more enlightened GPs/PAs... at least I hope they did..
Thank you for this post! Even though it’s only been 2.5 years for me I have tapered 3 times and keep getting stuck at 2 - 3 mg and have been wondering if I will be here forever. My labs show no inflammation but my body says different when I taper below 3 mg as the most recent
I made appointment to see a new Rheumatologist next week for the sole purpose of getting help with tapering off steroids and getting a new ‘opinion’ if that’s even possible.
I doubt you’ll be there forever -but PMR lasts a lot longer than 2.5mg years…
Even though your inflammation markers aren’t raised (and they aren’t always) doesn’t mean it’s isn’t very much alive. Listen to your body - it’s telling you the PMR is still there!
Just be patient … and in all honestly many people would be happy at 3mg at the two and a half year mark.
The only possible "help" is another drug which may have worse adverse effects than 2-3mg pred and a good rheumy won't introduce one of them if you are so low. A top name in the PMR/GCA world told us a few years ago he often keeps patients on 2-3mg longterm to "avoid the risk of a relapse" - a tacit admission that PMR lasts a lot longer than they usually admit.
I agree. I do not wish another drug. My real issue is that methylprednisolone in the U.S. only comes in 4mg tabs as the smallest dose. So splitting below 2mg is impossible. Therefore difficult using the real slow taper with no more than a 10% reduction. Need to convert to another form of prednisone is my thinking.
The DSNS slow taper was developed partly to help people on enteric coated pred who couldn't take plain pred. At the time, e/c pred only came in 5 and 2.5mg tablets and they cannot be cut. So tapering had to be done in 2.5mg steps. It can be done by slowing it down even further by starting with just one day at the very much lower dose and much longer before you try it again - 10 days or more. Then the day of new, 9 days of old dose. You can also repeat each step a couple of times. It is possible.
Thank you. I have tried this method and this is what I used to get to 3mg. . I would like to go from 3mg to 2.5mg using DSNS but I can't cut into .5mg sizes. so going from 3mg to 2mg is too rapid and I immediately felt pain.
That's what I'm saying - you can slow the tapers down as much as you like and using the smallest amount you can cut a tablet into with a pill cutter. Missing 2mg once in a period of 2 weeks is pretty slow!
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