I have really been lucky with my PMR journey. Not complaining. But in the past week I've been feeling wonky. I should have predicted it. I've taken on too much, physically and mentally in the last several weeks. I lost my pacing and just kept crossing my fingers that the overdoing wouldn't start things up.
I've been on 3 straight for about 3 weeks now after a 57 day taper from 4 to 3. But a few days ago I started noticing a bit of clumsiness coming back into my gait, walking into a wall or two, a bit more fatigue. Then I started having pain in the upper thighs, and enough discomfort in my right shoulder, the one that has been the center of my PMR since the beginning, that I became concerned that I was about to head into a flare.
I asked myself what PMRpro would advise and I told myself to go up to 5 for a few days and see what happens. Today is the second day at 5 and I am feeling better. I got my markers tested today and my ESR is wnl. Haven't heard back about the CRP yet.
But here's my problem, when I asked myself what PMRpro would advise about how long I can/should stay at 5 and still be able to go straight back to 3, I didn't have an answer.
I remember that people who have flared actually go up by more than I have, like 5mgs more than the present or most comfortable lowest dose. Going up from 3 to 5 seems to be working, but I don't know long I can hang out at five and go quickly back to 3.
It is truly humbling to have read PMRpro give this advice so many times and now that I'm dealing with this issue, I'm almost clueless. Duh.
Thanks all! And a Happy New Year to everyone in this wonderful community.
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Hindags
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Until the symptoms have gone/are stable. But you have passed on another "what would PMRpro say": add 5mg to where you flared for up to a week and then drop back to 1mg ABOVE where you flared. Obviously where you flared is already not enough. Doing it for a few days (often 3 is enough) often gets it done quicker. Until 10 days, even 2 weeks, you needn't consider tapering,
However slow the taper - suspend it when you have lots to do, even if you feel physically up to it. And now you are at 5mg, stop worrying about the taper - Rod Hughes keeps patients at 5mg for anything up to 9 months to let their body catch up. The Kirwan approach keeps patients at 10mg for a year. I am absolutely positive the reductions in flares that both approaches see has a lot to do with that.
Following your advice I went up another 2.5mg this morning (Thursday 27th) in addition to the 5mg I took last night ( Weds 26th.) My lab results all came back today. ESR is 23, normal for me. My CRP is less than .01, about as low as they measure it. Urinanalysis was normal except for “trace leukocyte esterase , UA trace Leu/ul” which from what I’ve read is probably nothing to worry about.
Since my markers have typically been quite sensitive to inflammation of any kind, I’m wondering if I’m experiencing muscular aches from some overdoing rather than an outright flare.
I don’t know which I’d prefer this to be. At least I now have a plan for dealing with a flare. If it’s my muscles having trouble healing from exertion or exercise, I wonder how long it will be before that aspect of PMR corrects itself, if ever. ,
The markers may lag behind the development of the inflammation - but maybe it is just a combination. Has the extra pred helped? If not - you don't need to keep taking it. If it has - accept you may have headed things off at the pass!!!!
I have taken some extra Pred to get me through busy Christmas time ...house from 2 to 7 for 5 days! I had been on 2 or 1&1/2 mg for 2 weeks, but started to ache in late afternoon, so took extra 2 mg, then 5 mg following day which cleared symptom and have taken 5mg now for 3 days and feel in control again. Probably stay at 5 mg over New Year festivities and a 3 day break away first week in Jan.
Decision will be do I reduce again before my big 3 week holiday to Cuba( where I want to be able to walk pain free on tours) which starts on Jan16th 2019 ( delayed Golden Wedding Anniversary treat to ourselves. We built in an extra rest day for me at each of the 4 hotel stays, plus a week at the relax on white sand beach all inclusive stay at the end.)? What do forumites think?
I'm glad I'm not the only one to feel they asked questions they should know the answers to. I think I ask the same questions over and over. Hope you are feeling better soon.
Thank you Hindags for asking this, I’m much the same at the moment-been fine on 1mg for months and months (been briefly in Club Zero a couple of times) but for the last 10days had slightly achy upper arms and thighs and stiff when getting up- went up to 2mg yesterday, then 4mg this morning-feeling better but not sure why my usual dose hasn’t done the trick recently. Maybe Christmas has a lot to answer for? Bizarrely my usual early warning symptom of under-dosing - waking at 3.50am in a sweaty mess has been absent. Or the alcohol consumption over the festive season has masked that but increased body inflammation 😕
There are two aspects to flares - the ones that happen because you have reduced the dose too far, including overdoing it on top or dealing with stress. Then there is an actual increase in in disease activity - a completely separate aspect and one over which you have no control at all.
I have said quite often that I believe there are various forms of PMR - and one form I think exists is where the disease process settles for an extended period, during which you are able to reduce the dose, and then it wakes up again for no apparent reason. Over the years I have had a few episodes that have fitted that pattern - and when they happen there is nothing to do but find the new minimum dose. Sometimes it is just a few mg, currently I have had to return to the starting dose. Again. That's happened 3 times I think, before it has been lower doses that were enough.
Thank you, yes that would definitely fit with me. In retrospect I’m sure I had PMR for atleast a year or longer, intermittently very stiff, aching and exhausted, before it got bad enough for long enough for me to visit the GP and be very efficiently diagnosed and put on prednisolone. I had kept trying to increase my exercise as you’re supposed to for tiredness; not my smartest decision but at least it made diagnosis easy when I really couldn’t move! And again looking back, my symptoms seemed to have waxed and waned over the years-can’t find a pattern. It infuriates me at times, though I’ve been luckier than many.
Hope things settle for us all soon - every good wish for 2019 and thank you again for all your help x
I think there is a substantial number of us where it chugs along, settling for a while but not enough to get off pred, especially if we use a slow reduction approach, and then wakes up again. Some people possibly have a long enough gap between episodes and are gung-ho enough about reducing to get off pred or very low and then it explodes into life again. Pain in the anatomy - but that's PMR
I wonder whether I’m experiencing adrenal symptoms as much as PMR. Perhaps the stress of the season is dysregulating the HPA. I’m actually more wobbly than stiff, reminiscent of that passage from Pred adrenaline to my own adrenal function.
I am feeling the same, upped my dose by 2mg hasn’t helped, if I add 5mg as PMRpro suggests, I would be back to my starting dose (last April 15mg) should I do this ?
I don’t know what to recommend for you. But smtg similar happened to me. I went from 20 to 14 in 4 months, had a flare and went up to 20 again but as able to taper down more quickly the second time.
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