Was first diagnosed 2007, responded well to Pred. Really slow reduction as seemed to get symptoms even with tiny reductions. On 1mg from about 2016 till 2022 and felt really well (though still resting each day). Encouraged to reduce to 0mg which I successfully did over 6 months and finally stopped November 2022. Great for 2 1/2 months :)Symptoms started again mid January - fatigue, stiffness etc etc
Had some Pred left so started taking 0.5mg 6 weeks ago. Better but still symptoms especially thigh muscles and fatigue.
Speaking to GP Friday.
Any thoughts anyone?
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Labyrinthlover
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Sorry to hear that -but not uncommon, unfortunately. .
But not always quite the same -and at least you know what to expect (good or bad) -hopefully you can catch it quick and only need a very low dose to get it back under control.
Not uncommon! Even 1/2mg can be enough to clear out the tiny bit of inflammation that is being created by a very low level of activity of the underlying autoimmune part of PMR but go down to zero and that dripping tap of inflammation eventually fills the bucket and overflows - symptoms again. Prof Dasgupta, formerly of Southend, told us he kept patients at 2-3mg long term to reduce the risk of relapses. I think that is too high to give up - 1mg is often plenty.
I'd take 5mg for a few days and go back to 1/2mg again and see if a bit of a springclean lets you go back to a daily dust ...
It is a standard approach to a flare due to too low a dose. You can take the higher dose for up to 7-10 days and just drop back to the lower dose because it wasn't long enough to affect adrenal function.
So glad I've rejoined this forum. I found it very helpful way back when needed help with slow tapering. Thought I might be able to use the wisdom here again
Been reading some other posts and found in a summary of tapering by Dorset Lady that the aim is "not necessarily to get to zero but to the lowest dose that gives the relief that the initial dose did". That was news to me! When did that come in?Also the stuff about adrenals taking a long time to recover - even up to a year after the last dose. Could my symptoms be due to that rather than a flare????
I think I said (and do very often) -“during tapering you are not reducing relentlessly(or come what may) to zero but to the lowest dose that gives the relief that the initial dose did”.
Sorry if I misled you or you misunderstood.
Can you PM the link where that appears please…
Obviously the ultimate aim is to get to zero -but you need to do it sensibly and not be rush headlong into tapering too quickly -which some doctors are apt promote.
Adrenals can take anything up to a year to be fully functioning…as your fatigue could be sign of that -as could stiffness (but not as likely). However would have expected some adrenal insufficiency symptoms to have been present as you reduced Pred.
We (DL and I) have been saying this for some years on the forum - you don't simply take a course of pred, reducing to zero and stop. The aim is to find the lowest dose that manages the symptoms and keeps them in remission, it isn't a cure. It is a process called titration and used for a lot of drugs but usually they start low and build up slowly to find the lowest dose that provides the desired result. With pred that doesn't work well and would take ages - you start high and work to low. Unfortunately, the guidelines don't make it clear, they DO say individual adjustments in dose and duration of treatment are likely to be required but don't spell it out. So we say - "not reducing relentlessly to zero".
which says "The treatment targets are achievement and maintenance of remission, as well as prevention of tissue ischaemia and vascular damage". Doctors understand that for RA and wouldn't announce to a patient they are to stop their medication because the symptoms are gone - in the same way, they don't stop BP meds because their BP is now fine, They understand that it is under control BECAUSE of the medication. But they are so convinced that PMR only lasts 2 years that they are blind to the lack of logic.
You will always need to TRY to reduce the dose, 1/2 to 1mg at a time - but not at the expense of a return of symptoms because of too low a dose. A very small proportion of patients have PMR for more than 10 years, even for life. Forcing them to stop pred as some doctors do "because it can't be PMR" means they have no decent QOL.
You said, "A very small proportion of patients have PMR for more than 10 years, even for life. Forcing them to stop pred as some doctors do "because it can't be PMR" means they have no decent QOL."
I'll say, 'Amen to that!'
I've had PMR now for nearly 14 yrs and been on Pred for nearly 13 yrs. I'd really like to get off Pred because the day after I started taking it I got Tinnitus, and it's just as loud and intrusive now as it was then. However, I'm a practical sort of person, and know that it may still take me years to get off Pred altogether, if ever, even though I'm now down to 3mgs.
If I find I have to stay on Pred for the rest of my life then I happily will, whatever the GP might have to say about it, because otherwise I'd lose what little QOL I have left, and I won't give up what I have got without a fight!
Many thanks for further clarifications.Reading other posts, I'm feeling like I just dropped off the end of the conveyor belt. I haven't had an annual review or bloods for ages and I didn't push for them because I felt happy enough on 1mg.....
So if I'm now accepting that the PMR is still active, even in a small way, I guess I need to be pushing for those as well as going back on Adcal etc???
I’ve been on 1mg of pred for just over a year now and been feeling really good, (First diagnosed with PMR in 2016 and put on 20 mg pred).
it’s been up n down over the years, but I decided to start to reduce to 1/2 mg in January, but had aches return etc. so stayed at 1mg for a bit and am now reducing to 3/4 mg. Which so far is going well. I’m doing the DSNS as I always do with my reductions and listening to my body.
I had blood test done recently which came back normal, but I never read much into that, apart from (hopefully) no nasties to report x
I’m so grateful to this site and all the wisdom and knowledge that we receive.
I do hope that all goes well for you, it certainly is a 🐢tortoise race , (or not), as the case May be x
Many thanks Carole. I think what took me by surprise was that during the very slow reduction, and for 2 months afterwards I felt fine. Then the symptoms crept back. PMRPro's bucket analogy is very helpful in understanding why.
So it felt like a productive consultation. GP wanted to do a whole batch of bloods as well as the inflammatory markers (which, incidentally, have always tallied pretty accurately with my symptoms though I know that's not the case for everyone) to rule out any other causes of fatigue : thyroid, iron etc. He agreed with my suggestion for Basal Cortisol which was good.
He wants to get the bloods done before reviewing the medication, and was thinking of suggesting I go up to 1mg. I then suggested the 5mg for a few days then back down and he didn't seem to know about that, so I wondered if there's a link to info about that?
I mentioned the '5mg for a week then back down to 1mg or 1/2 mg' but he's not heard of it so is not confident for me to do that.
He's suggesting 5mg for a week, 4mg for a week, 3mg for a week, 2mg for a week then if no recurrence of symptoms 1mg after a week. He said the guidance is usually to drop by 1mg every three weeks but as I was successfully on 1mg for such a long time before he was happy to drop every week, though pausing if symptoms return
I said I was a bit concerned as being on a higher dose for a bit longer might dampen my adrenals. He said that's thought only to be likely after a dose greater than 5mg for over 3 months.
Can you think if any potential problems with his suggestion?
Not really though it does depend on whether this is a relapse which to me suggests an increase in disease activity or a flare of symptoms because you overshot the dose you really need at present which is the same at zero as any other dose.
The big question is - what does he want to do after 1mg? I think it all comes down to a fundamental misunderstanding of how this disease works - as does the idea that a reduction of 1mg per week allows enough time to know if synptoms return,
Thank you. Also thank you for pointing out the difference between relapse and flare. I hadn't realised that before.
So if a flare, adding 5mg more for a few days is enough to get rid of the build up of inflammation, then back to a slightly higher dose to make sure it doesn't happen again?
Whereas if a relapse, that implies a recurrence of the disease after it had gone completely? In which case a higher dose to control symptoms and slow reduction as in the beginning?
So if I treated it as a flare and found the symptoms recurring when I dropped back, would that suggest it was a relapse after all?
The confusing thing is that I was symptom free for 2 months after stopping.....
When you are symptom-free for a few months and the PMR turns up again that is almost always because the underlying autoimmune disease that causes the symptoms hadn't burned out entirely and gone away but was at a very low level. As little as 1/2mg a day can keep it entirely under wraps but zero pred allows the inflammation to build up and, like a dripping tap fills a bucket sooner or later, eventually it reaches a level that causes symptoms again. It really is quite common and it can take up to 6 months before the penny drops.
But yes - you don't know how much you will need it it is a relapse - if 5mg doesn't calm it down it is obvious you need more but how much is a "how long is a piece of string?" question. Overshooting the right dose is relatively easy.
Thanks again.I've taken 5mg for 4 days now and the thigh stiffness and pain has definitely gone though fatigue still there (though I did have two tough days over the weekend).
I plan to take 5mg for a few more days.
I'm still not sure whether to then drop straight down to 1mg (that's what controlled it for several years) or to go more slowly down via 4, 3, 2 etc
I think I would be inclined to try a slower option rather than straight back to 1mg. Perhaps try 3mg and see how that pans out -a couple of weeks should tell you -then have another think about next drop.
I'd drop to 2,5 and then taper slowly - though if 1mg was good enough for months, that fits with the time it took to reappear and is probably still enough.
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