I was diagnosed with PMR a bit over a year and 4 months ago (actually, I deduced it myself from internet research, and my primary doctor agreed with my diagnosis when I reviewed it with him). My primary started me on 20mg prednisone per day and then referred me to a rheumatologist. I got complete relief after two or three days on the prednisone, which was viewed as a confirmation of the PMR diagnosis. After a month on 20 mg/day, my rheumy tapered me down in two week increments as follows: 15mg, 12.5mg, 10mg, then 1 mg every two weeks after that. When the pain began to return at 9 mg, he slowed the taper changes from every 2 weeks to every 4 weeks. This did not make the pain go away; it got gradually stronger until when I was finally off prednisone my pain was about the same as when I began the prednisone. When I saw my rheumy in March as COVID was ramping up in NY state, he said he would like to put me on methotrexate, but wouldn't do it then because 1) it would lower my immune system (not a good thing during the epidemic) and 2) my pain was being relieved well by my use of kratom. So he said "See me again in 3 months and we'll see where you are and where the COVID levels are." Three weeks before that appointment, I went on an anti-inflammatory diet for auto-immune diseases (4 day fast, followed by only eating from a small selection of non-inflammatory foods for a month); it definitely helped to some extent at first, but it did not cure the PMR pain which began returning after the fast. By the time I saw my rheumy via internet in mid-June (3 weeks ago), my pain had become much worse and COVID had declined a lot in our area, so he said he recommended I start methotrexate. I said "Not yet" because I wanted to do more research first. Since then I've found this forum and have been learning about taper methods; it seems that my "fixed schedule taper" was not the right way to taper.
All of that is my history for the past year and four months. (I should also mention that I have a diagnosis of psoriatic arthritis from the same rheumy, but he thinks my symptoms at this time are due to the PMR. ) Now for my question: Should I redo the prednisone course using a taper one that goes down and up as needed (not straight down like my last taper); and if so which one? (I see there are several different tapering schemes posted in this forum.) Or should I go with my rheumy's methotrexate recommendation?
I'm not keen on either option (I don't like the way prednisone makes me feel, and I don't like the possible side effects of methotrexate), but I am willing to do whatever treatment has the best chance of success. Another problem is that the rheumy may not like me suggesting a different treatment (after all, he's the expert and I'm the newby to all this), but I am willing to brave that.
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benhemp
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“Another problem is that the rheumy may not like me suggesting a different treatment (after all, he's the expert and I'm the newby to all this), but I am willing to brave that.”
Well he may be, but he obviously doesn’t know how to treat PMR.
You don’t have a ‘course” of Pred- you take Pred as long as it takes the PMR to go into remission of it’s own accord. Plus you need to take the right amount at the right time! There is no cure, it’s a matter of controlling symptoms.
The taper was much too fast - even when he “slowed” it after 9mg - and you should never reduce when you have symptoms - that's just showing the condition isn’t controlled on the current does, so why reduce the and make it worse.
As you probably know, you really need to start the whole procedure again - sorry. But this time follow a more sensible taper, and listen to your body!
If you are allowed to taper properly there is no need to add in MTX or anything else.
This might give you an idea of how long PMR can last -
Hello there. Glad you found the site and did some reading. You’ll have seen that autoimmune illnesses stop when they’re ready and the Pred is there as an anti inflammatory while your body wants to attack itself. It isn’t a treatment that succeeds or fails. The ideal is that you reduce the Pred slowly enough to be in synch with the reducing disease activity, which as you’ve found out, takes longer than you or docs want. Research has found that the median duration is about 5 years so why docs tell patients that the treatment has failed after 1 or 2 is odd. Those who understand PMR say a slow reduction with the minimum up jumps up; some docs hold patients at 10mg for a year even. So, I’d say be flexible but you need to be reducing slowly enough to avoid yo-yoing your dose which is found to become less effective. Yes, if life throws you a curve ball you might need to increase, particularly when you are at dose below 10mg. But, it isn’t good to rush down, hit the end stops, shoot back up and rush down again. I always think of it as trying to fool the body into not realising the Pred has dropped.
The other thing your doc may have been doing was reducing the Pred faster than your adrenal glands could cope with. Once below about 8mg your glands need to start to wake up to make up the shortfall. This bit can take months. I had to reduce 0.5mg every 8-14 weeks between 7mg and 1mg, otherwise I felt terrible including fluey body pain. Sometimes I wonder if people have a flare because the stress of adrenal insufficiency is enough to trigger the autoimmune thing, but that’s just my theory.
Why docs see Methotrexate and other DMARDs as so much more benign I have no idea. Plus the fact that they don’t help everybody.
When my Pred for GCA got under way I decided that I was not going to follow their plan because of the withdrawal symptoms and a gut feeling, but I always told them what I was doing and why. Unless they had a reason specific to me why not instead of a vague ‘Pred is bad’ I carried on. It wasn’t easy but as time went on and I had no flares, was in good shape and no diabetes, they had less ammunition. In the end one doc wanted to know what my plan was and wrote it down.
The trouble is with these conditions is that there is no set plan with a guarantee of success in a given time. It is what it is and learning to live with and manage side effects is part of it. Anyway, people more knowledgeable about PMR will give some more specific advice soon I’m sure.
You need a doctor who understands what PMR is and how it works. I knew what I would read when I saw the title: there is no "course of pred" that deals with PMR. Just like a "course" of methotrexate won't manage RA once you stop taking it, pred doesn't manage PMR except when you are taking a high enough dose to manage the daily recurrence of inflammation. You start with too high a dose and taper it slowly in a process called titration to find the lowest dose that manages the symptoms as well as the starting dose did. Only 1 in 5 patients is able to stop pred after a year, by 2 years about a third are off. Half take just under 6 years. And the rest of us even longer. A fixed term contract is NOT the way to manage PMR - you cannot know how long it is likely to last or predict anything else about this particular patient, they are all different
I'm surprised he is so adamant it isn't PsA - it too can have a polymyalgic presentation. There is also a wide choice of medication:
and I do think there is a role for that to be looked at.
He may think he is the expert - but his actions show he isn't even on the bottom rung of the PMR ladder. When the pain started to return he shouldn't have SLOWED the taper, he should have STOPPED the taper. And gone back to 10mg for the time being.
This approach would have you still at 10mg (just):
They find it reduces the rate of flare from 3 in 5 to 1 in 5 - because they keep patients at a decent dose for the first 15-16 months which is when flares are most likely to happen because you overshoot your target. Getting into a yoyo pattern with dose is the worst thing you can do - it makes the rest of the journey less difficult.
Almost all flares/relapses are due to overenthusiastic reduction attempts. That is why our approaches seem to work well - we never allow a flare to happen in the first place if we can help it. And we understand how PMR works...
Thanks for the three very thoughtful, helpful, quick replies to my question! I am learning so much. You all helped me reset my hope for a quick year of prednisone (or even two years) and then things would be back to normal. Not what I wanted, but what I needed.
With respect to my rheumy, I wonder whether he is suggesting MTX because of my prior history of psoriatic arthritis, even though he feels the PMR is my main challenge right now. My psoriatic arthritis has been very sporadic, not constant like the pain I have right now.
Also with respect to my rheumy, an older doctor with 30 years of experience, I wonder whether his approach was "the old way" and the very long, based-on-your-body type of tapering covered here is a much newer approach (say, the last 10 to 15 years?).
If I need a new rheumatologist, I'm wondering how I would go about finding a good one for PMR. I read a detailed medical article here on this site about how to diagnose PMR correctly; it was authored by a practice devoted to that in the UK. DorsetLady's reply let me know there is a practice (RheumNow) in Austin, TX that seems in harmony with this site. However, I am in NY state, far from Austin. Is there a site with links to rheumy's who take this forum's points of view about diagnosis and treatment for PMR? I searched for such here but didn't find it.
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