PMR same ole same ole
Posted , 13 users are following.
same ole question re tapering and hurting and when to go back up on pred. I was at 4 1/2 in June but couldn't handle the bone crushing fatigue so at the advice of you all, I went back up to 5 a couple weeks ago, and have been a little better. Yesterday evidently was a killer for me: walked 6000 steps (my personal best since PMR), cleaned the bathroom, watered the backyard flowers with a very heavy hose that I had to drag around, made big salad for dinner with lots of chopping and peeling and standing, and topped it all off with my little exercises (listed on this forum for PMR patients).
awoke in middle of night with all over pain...hips, legs, feet, hands, shoulders, neck, etc. had to get up, couldn't sleep at all.
soooo....what do you all recommend? Go back up on pred for a couple days to see if I can calm things down, (and rest my body)? or just rest my body for another day or two to see if things settle back down on their own? None of us want a flare, none of want to increase pred. I've read both sides here on this forum but today I'm waffling. I just don't know what to do. Thanks for your help.
0 likes, 40 replies
Diana112 Twopies
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Good grief Twopies, you don't do things by halves! You obviously know you really overdid it and in some ways I might be tempted to sit it out but I think maybe your body might need a bit of help considering how much you did and upping the dose for a few days might be the safer option. Good Luck.
Twopies Diana112
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Diana112 Twopies
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I'm sure it will settle down Twopies. It really is so hard coming to terms with not being able to do the things we used to do without thinking, once upon a time.
Anhaga Twopies
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I'd take it easy today and see if it settles down. May not be the PMR as such but the extra exercise giving you a perfectly normal response to suddenly being called into action after being a bit inactive for a while. As I think in some cases pred is partly responsible for making us so sensitive to exercise it seems counter intuitive to increase pred unless it's really needed for a flare of the actual disease process. Hope you feel better tomorrow.
Twopies Anhaga
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BettyE Twopies
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You say that you are " a little better" on 5 compared with 4.5. Just a little?. If so then I'd say you maybe needed a bigger increase and with yesterday's schedule I would guess you certainly do and before the pain settles in for a longer time.
We all hate having to increase but it's a trade off not a failure as has been said many times. You are only on a low dose now. I think Eileen has said that we need around 7 even when we are relying on our bodies' natural provision. Give yourself the best chance of a decent life. Hope you feel more comfortable very soon.
Twopies BettyE
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Anhaga Twopies
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I've been on pred since June 2015, and in many ways the last year has been the hardest since treatment started. I think I'm at my lowest best dose, keep trying to push a little lower, but I know I have to be really careful. I'm not sure whether I'll be better at pred zero when the time comes, or if all this is simply old age hitting me good and hard. Either way it's hard to accept. Perhaps if the aged were treated with more kindness and respect it would be easier. For example, it's hard to have to sprint across the road, in a crosswalk mind you, to avoid being struck by an auto, just because drivers have no patience.
Twopies Anhaga
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I get what you are saying about aging but my friends the same age as me with their own myriad of health problems (none which I want) are out there doing things I can only dream of. Things that seniors enjoy.
Last Christmas we went to a popular restaurant for dinner, huge crowds, had to wait our turn. Well, I can’t stand for very long (45 minute wait—this was with a reservation mind you—) so I had to sit on one of the benches in the lobby. There were other people there with walkers and canes, not enough benches for all of us. I don’t look sick. Boy, did I get the dirty looks. But there was no way I could have stood for that long.
EileenH Twopies
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The dose has little to do with it. You start on a dose that is going to be plenty to mop up all the existing inflammation. Then you taper the dose to find the lowest dose that is enough to manage the symptoms as well as the starting dose did.
The pred has no effect on the disease process itself - it is merely mopping up the puddle of inflammation caused by the dripping tap of the disease. That is unchanged and so your muscles are still in the same sort of state as they were at first.
Anhaga Twopies
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I think the relatively minor flare I had last summer really set me back quite a bit. More than you'd expect, really. I don't understand why.
margot34956 Twopies
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Hi Twopies, I also am one of those who is never pain free. Absolutely understanding you wanting to do the same as you have always done!
also the standing for long periods and what you experienced with those who gave you dirty looks because you don't look ill, I feel for you and am really wishing for you to be able to continue happily with your taper.
All the best!
Twopies margot34956
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Anhaga Twopies
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Michdonn Anhaga
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Anhaga Michdonn
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Michdonn, are you talking to me? I've never been athletic, have no interest in biking or skiing, but throughout prediagnosis I continued to walk and exercise, and after treatment I upped my walking and have taken up Nordic walking as well. I do a slew of physio exercises, a little yoga, and, if I remember, also wear a weighted vest, or do Tai chi. I was referring to the fact that Twopies couldn't stand in line for 45 minutes waiting to be seated. Nor more could I. And people gave her dirty looks because she looks healthy. I suggested she behave as disabled as possible when standing up and going to the table in order to teach the judgemental folk a lesson.
Michdonn Anhaga
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margot34956 Twopies
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I did assume too that you would feel better on lower doses. I do think sleeping does get better.
Well done you!! half a block before turning around!! Maddening, yes but it must be that way, I so understand the frustration
EileenH Twopies
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And by the end of the month it'll be nearer 2 blocks - once you start it is surprising how it improves. And maybe 2x half the block with a good rest period between would work? Often it is trying to bite off the whole lot that doesn't work - nibbling at it does.
Twopies EileenH
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I think I’m looking for assurances that it’s ok to go back up. My question is go back up to what, stay there for how long, and then decrease to what?
EileenH Twopies
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Why shouldn't it be OK to go back up? If 4 1/2 isn't enough for you to function it is no use is it? It doesn't matter what method you use to reduce, you won't get below the dose you need to manage the inflammation and, at this stage, it may not be slow enough for adrenal function to catch up and the result is overwhelming fatigue. It is difficult to tell which it is for you, I'd suspect slow return of adrenal function since your main complaint is fatigue.
One top and very respected PMR specialist in the UK likes to keep his patients at 5mg for up to 9 months - once they get there. He finds that makes the rest of the taper easier. Anything below 7mg is a physiological dose - less than the equivalent of the amount of natural corticosteroid, cortisol, your body makes per day - so isn't causing much in the way of problems. If you take less, your body needs to make more. The end result is the same amount of steroid.
If you can manage reasonably well on 5mg that would be good - but if you need 1/2mg more, you need 1/2mg more. It doesn't mean you won't get lower - just not yet. If it were me, I would stick at whichever dose you settle on for at least a couple of months before trying a slow and careful 1/2mg reduction again. Many people find it doesn't work the first couple of time - but eventually it does. And at this level that may happen for each new dose until suddenly your body gets the idea.
Twopies EileenH
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EileenH Twopies
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