I was diagnosed in January 2024 - classic symptoms but no elevated markers. Started at 20 mg and in days I felt amazing - all symptoms were gone. I have gone 20-15-12.5-10-7.5 on about a 4 week step timing and have now have just reduced from 7.5 to 6.25. I am on day 4 of the reduction and feel great. How long does it take before the body decides you have overshot a reduction? I have an aggressive rheumatologist and have been going well slower than he proposed but he is OK with that. (He wanted to go from 7.5 to 5 and he seems to be OK with 2 weeks to a drop which I have also declined)
So far I have not had any issues with muscles - I thought I might have last drop but I am really active and I think my arms would have been sore with or without the PMR….
I have learned a ton from the forum and very much appreciate all of the help and time you folks put into this. Thanks for any thoughts
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NCStateLine
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At least 2 weeks but it isn’t set in stone because it depends on the level of your activity as to how quickly any inflammation builds up to symptomatic levels.
That is slow compared to what your rheumy wanted??? Heavens! However - when it works it is fine and does get you to a low dose quickly which is a good thing, But it tends only to work for someone who is going to need a lowish dose longerterm. It is the way we use titration in chemistry - you overshoot and go back to the last good dose and then creep down much more slowly to find the accurate endpoint.
It depends - but 2 weeks is really not long enough to see if the new dose is only slightly too low, If it is lots too low you may know in a couple of days. Any immediate reaction is more likely to be the body protesting about the change in dose rather than it is too low.
With my first encounter with pred, after 5 years of quite bad PMR symptoms, I responded in 6 hours and tapered as 2 weeks each of 15/10/5mg and stop. I had been fine all through the 2 weeks at 5mg but within 6 hours of missing the first 5mg dose of pred I was as bad as I had been pre-pred. I never really got the pain and stiffness back under control and struggled for years to taper, taking 4 years to get reliably under 10mg. But it is impossible to tell if the original 10mg was already too low and the inflammation was building up and took the 2 weeks of 5mg to manifest.
Well done for taking such a proactive approach to your treatment and having the knowledge to challenge your Rheumatologist on his proposed tapering plan.
A reduction of 1mg is often advised under 7mg to encourage a gentle recovery of your adrenal glands, but many find 1/2 mg to be as much as they can manage without pain. You might be one of the lucky ones who sail through PMR fairly easily, but you may also find that you have reached your best dose and should now slow down a lot in your taper. If you have already gone below your ideal dose you will probability get a reminder from your PMR that it is still active, and better to recognise that before it gets up a head of steam and you have a nasty flare which will set you back.
I followed my doctors tapering plan of monthly reduction and it was only a chance remark to another doctor in the same practice that alerted me to the fact that I had tapered too fast. I am now in my 7th year of PMR and finally below 5mg, just saying! Really hope you have smooth sailing.
I would suggest that if you can, slow down the reduction. I suggest at least 4 weeks for each drop and no more than 10% reduction each time.
It may be that you only needed a small dose to get your PMR under control and 20mg was way too high which is why it worked so quickly and you felt so good. But the last thing that you want to do is to go down past your efficacious dose so fast that your symptoms come back with a vengeance and you have to go back up to take control.
Coupled with this, your adrenal glands need to wake up and take over from the lack of pred and I think that this can take a long time so even if you don't have PMR symptoms, you might be hit by the 'deathly fatigue' that many people on the forum mention.
How long does it take before the body decides you have overshot a reduction?
As others have said, bit of a “how long is a piece of string’ question - it does vary… we usually say at least over a week, but can be longer. It really depends how long it takes the inflammation to build up again due to not enough Pred.
We do also suggest that 4 weeks at each dose is probably enough to know it’s okay to reduce ….but that timescale may be longer as you reduce the dose, and there is less wriggle room with the amount of Pred in your system.
Many doctors [no matter how experienced they are, as you would expect rheumatologists to be] still seem to have the view once you are on the Pred it’s just as matter of reducing the dose. It’s not, your PMR is still alive and kicking, it doesn’t disappear just because you are on medication.
Initially a higher dose is required to get the existing inflammation and the daily shedding under control…but then you need to reduce in a sensible manner to find the lowest dose to maintain that level of relief until your PMR goes into remission [and no longer produces the inflammation on a daily basis] … and unfortunately no-one can say how long that will take.
Your rheumatologist is a bit gung-ho with their views, and although things appear to have been okay so far, now is definitely the time to ease your foot off the tapering pedal.
Thanks much to all for sage advice. Definitely happy to be this far this fast and will be slowing down to the 10%. It will be interesting to see how it goes from here and if there is anything to the thoughts my rheumy had that since my markers were never elevated that this could be a milder case. Fingers crossed. I can say before I was on pred it was two months of solid misery with the classic symptoms - sure didn’t feel like “PMR light” then.
How does he define "milder"? My markers were never elevated, it is common in younger onset patient. But while I haven't had some of the awful episodes some have even during the non-pred period, despite now being on Actemra, I still need some pred to manage the muscle symptoms fully after 15 years of pred and 20 years of PMR.
That is a good question. He in fact is a Physicians Assistant. He consults with the Rheumy like he is going to see Oz. I have only met the Rheumy once and I do know the PA reviews each case with him. Since I have been a low amount of trouble I don’t see the actual rheumy - only at my initial visit in January. Because he is a PA I think he is less opinionated. He has been around and quite knowledgeable, but as you guys have mentioned he is one that’s on a strong quest to get to zero. I will continue to slow him down….. Thanks!
You do know how much training PAs get? There are roles they can be valuable in - management of an autoimmune disorder like PMR? Not so much if you ask me ,,,
Probably…. but if he works that closely with the Rheumy he needs to pass on the bad news as well as the good.. and if NCStateLine follows the current protocol it’s likely to be a painful outcome.
When it comes to reducing a dose I found that the lower I went the slower I needed to taper. I only reduced by 1 mg from 15 mg, but quite quickly at first. Was at 10 approx 2 months after starting pred. Then I started one of the slow taper methods (Dead Slow Nearly Stop) which I gradually slowed down over the next few months, tapering by no more than 1/2 mg after reaching 7 mg. Was at 3 mg by the end of the first year, but have to now tell you that I started pred in the spring of 2014 and have only been off pred since February 2024. The intervening years I was usually at or around 2 mg maintenance, with a couple of flares, one major, and an unsuccessful flirtation with zero in 2020. In my experience it never paid off to wait and see if any slight uptick in symptoms was pred withdrawal or PMR, it was nearly always PMR. Pred withdrawal in the absence of PMR activity would occur within a day and subside, never increase. If it increased it was a sign to carry on with my dose, not decrease, possibly even go up a teeny bit for a while. It took me a very long time to admit this. 🍀
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