Hello all, I’m now 18 months into my PMR journey, it’s been complicated by having to deal with bladder cancer which was only discovered during a PMR related test. (Every cloud!) I’ve recently completed a year long course of treatment for the cancer, the last treatment particularly has made the PMR worse and I suspect, has contributed to a third flair.
I am aware that the main trigger for these flairs has been my tapering (very slowly) to a dose which has not at been sufficient to keep the PMR suppressed. So I have two questions, 1, knowing that my symptoms flair if I try to go below 6mg daily, should I accept that this is my minimum dose and just stick at this dose until the PMR decides to go? and 2, what is the best way to deal with a flair? After previous flairs I have upped my dose by 3or 4 mg for 3 days to get the inflammation under control and then dropped back to a dose 1mg higher than that at which the flair happened. (Normally a drop of this size in one a go would not be possible but because I had been on the higher dose only briefly, it has been fine) . I’ve been trying this method of dealing with my flair but on this occasion I’ve haven’t been as successful as I have in the past ( like I say , I think that the last cancer treatment was just one step too far for my weakened immune system. I’m seeing my GP on Friday but to be honest I would value your advice more! Many thanks in advance.
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Toolmart
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Sorry to hear about your additional health issues, must have made life very difficult.
Would say that maybe 6mg is the level you actually need at the moment, doesn’t mean you’ll never get below that, but not right now. Many would say it’s not a bad level to be stuck at, it’s only just below the natural level of cortisol your body produces, so maybe it’s a sticking point because your adrenal glands are a bit lax about kicking back in.
As for dealing with flares, recommend action is to go to 5mg above the dose where you were last symptom free, get things under control - about a week, maybe less, and then drop back to that level. So, if you were ok at say 7mg, go up to 12mg for the necessary time, and then back down to 7mg. I would then stay at 7mg for at least a couple of weeks before considering a taper.
You might also like to consider reducing by 0.5mg a time and/or a slow taper in future, might make things easier-
6mg seems "your" dose - and it is a safe one, lower than the amount of cortisol (the body's natural corticosteroid) that the body needs to function. What we have always suggested is that once you have identified that dose you should stick there for a few months - and then try 0.5mg very slowly (using one of the slow tapers we go on about). And stick at that dose long enough to be sure it is still enough. Rinse and repeat.
As Dl says, maybe it is also the adrenal function bit that is contributing but the way round that is also very slow reduction.
I have had 2 flares in the 2 years since I was diagnosed with PMR. Each time, I've needed much longer than 3 days to get rid of the symptoms. My GP and Rheumatologist have advised at least a month on the higher dose and then a very gradual taper down.
A year ago I tapered at 1mg / month, but after this year's flare I'm tapering at 0.5mg / month.
Last year I had obviously passed the dose I really needed and went up from 4mg to 10mg. This year I went up from 5mg to 8mg and am now tapering (DSNS) from 7.5 to 7mg.
Click on my name and have a look at my last post "Happy Birthday PMR" and you'll see my graphs - the green line is my pred dose. The blood results show my flares.
I'm sorry to hear about your bladder cancer, but what a good thing it was found and treated!
I think a lot depends on why you flared - was it because you reduced slightly too far or too fast or is it because the activity of the underlying autoimmune disorder has increased for some reason? When the reason is an increase in disease activity then you really have to start over again as you did at the start. I have only had the second sort of flare - and they seem to be getting tougher each time I fear.
I would like to think that it was because I reduced too far for the level of disease activity at the time. I've not needed to go back to my original 15mg dose.
Apart from residual damage in my right shoulder, I don't seem to have many signs of 'active' PMR, so I'm hoping things are under control on my present dose.
I'm seeing a 'stand in' Consultant in 3 weeks, as mine is not back at work until the autumn, as you know, so I'll see if they recommend an injection for my shoulder.
I'm sorry that you've been struggling for so long.
I think I must have reduced too far for the level of disease activity each time. I've not needed to go up to my original dose of 15mg.
I don't seem to have too many signs of 'active' PMR at the moment, so I'm hoping the present dose is enough.
My right shoulder has never recovered from last year's bursitis, so I'm hoping that I might be offered an injection when I see the 'stand in' Consultant in 3 weeks. (My Rheumatologist is off until the autumn, as you know.)
I'm sorry that you have been struggling for so long.
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