when you are having a really bad day because you just feel so beat up and rotten all over (per my previous post today, im having a bad day today due to gi distress), do you ever take an extra 1/2 mg pred? Im currently on 6 mg pred and have had pmr for 2 years. some days im just beat up, stiff and sore for unknown reasons, not a flare, just pmr rearing its ugly head, i guess. no way to predict when its going to happen. i just feel rotten. not the bone crushing fatigue that i sometimes have, just rotten. another pmr patient who has had pmr for 14 years now (and is down to 1 mg) told me from my onset that if you move one day with pmr, you wont move the next. while ive found that to be basically true, sometimes i find that i have a rotten day for no defineable reason. if any of you have those days, do you ever increase the pred or just wait for it to pass...which it invariably does...for some unknown reason. thank you,
I normally wait for it to pass but I’m not saying that’s the right approach. I don’t think that adding an occasional extra half or whole mg of pred will cause any setback. I did find it helped when I was heading to a flare and increased a half mg. It’s amazing the difference a very small amount can make. It may be worth increasing and then going back to normal amount the next day. Others with more knowledge will be along to advise.
thanks! its a crapshoot, isnt it? theres always that worry in the back of our minds that we might be headed towards a flare. i suspect that contributes to the thinking that going up a little might power through.
when i read about the pitfalls of yoyoing back and forth on the pred, im never sure what that means. is going up for 1/2 mg a day now and then, say once a month, considered yoyoing? dunno!
my first line of defense is to rest. Usually by taking a nap in the afternoon or after hard activity. If I dont feel well after nap I take extra 1mg that evening. Next day I go back to usual dose.
thanks. about how frequent do you do that? not trying to be picky, just trying to figure out what might work best for me.
so sorry you are going through a particularly rough time. I dont wait too long if I have pain, , because my experience is different from yours in that it almost never passes. I up my prednisone pretty quickly to where I was last comfortable, and give that 2 days before I add more. If its fatique, I usually don’t adjust.
Hope this bad patch passes quickly.
I wouldn’t consider .5mg now and then yoyoing. Following the DSNS method means we do a little of that and it works so I would say it isn’t much different. Others may not agree. I hope you find a solution that works for you.
oh! that makes sense, doesnt it? never thought of it that way.
I think yoyoing happens when people are sent back to the beginning with a flare when a smaller increase would have dealt with it. Then they get into a pattern of taking too much and dropping too quickly. Taking just enough to deal with a flare means it’s easier to come back down to the right level again without triggering another flare (or pred withdrawal). I’m sure the occasional small increase to deal with a problem isn’t yoyoing, but make sure you’ve got the flare under control before heading back down.
never thought of that. i see what you mean. and i think i did that–a year ago i was having pains in my legs at night so i went up to 10 for 3 days to calm things down. but instead of going back to where i was–6–i went back to 7. probably would have been ok to return back to 6; it wasnt a disaster but cost many months of getting back to 6 using the dsns method. looking back, ive wished i had gone right back to 6 to at least try it out.
sometimes, just stress, or simply overdoing (which i have not controllecd for almost 5 years, due to my inability to be able to clarify what overdoing, actually is, for me) can set you off.
After discovering this life saving site, i learned to give my self permission to go up 1 1/2- 2 mg prednisone, for 2- 3 days, and then taper back by 1/2 each day, till I reach my original dose, and that helps me get through it
it’s not a science, but it seems to be ok to experiment and figure out what works for you.
I take that as a sign to rest more. That seems to help a lot.
I just rest more and it really helps. i find this unexpected miserable feeling some days really baffling and annoying.
I SUSPECT MY BODY IS DOING SOME “reprogramming”.
If it’s just one day then I usually wait. But if I’m still feeling crappy the second day then I will take extra prednisone. But not as little amount as you mentioned I will take 5 mg and see if that helps. even though you’re on such a low amount and that would be doubling it I think that I would if I were in the situation. I’m also on 5 mg and I have also had it for 2 years. so I’m no doctor just another PMR suffer.
interesting that you do that…youre right, its not a science by any means. its been an eyeopener for me to read the different responses, the different decisions that all seem to work. im always so afraid to try an increase, not because im racing to get to zero, but because i worry about what harm it might do to my system. that is already harmed.
meant to say thank you for your comments!
unexpected, unpredictable and annoying. that about sums it up for me. i havent been increasing which is why i posted in the first place–to find out what others do. to date, ive been resting, not increasing. youre right, it eventually works itself out but its miserable in the meantime! as you know!
Just my story, where I’ve tried two different ways to deal with flares. My mistake last year was to not go up far enough to deal with a flare. It wasn’t a particularly serious one, but it was getting there. At the time I was attempting to get to one from 1.5. Instead of doing what the doctor advised, going to five, I only went to three. This was not enough. Eventually I went up to seven, which is five mg higher than my last securely best dose of two and that worked. But I wasn’t able to get back to 1.5 again, and it’s been well over a year. It took a year to get back to two. When I felt a bit of a flare a few weeks ago I wasted no time - went straight to seven, stayed there for two days, and dropped one mg at a time every two days or so. At two I stopped and have been here for a few weeks. I may cautiously try 1.5 again in a while but, lesson learned, one is not enough.
A riveting story! Im going to save it because a man i know has pmr; he got down to 4 mg, had a flare and went all the way back up to 20 and started all over again with the slow tapering. its taken him forever to get down to 6, his current dosage. perhaps if he had nipped it in the bud as you did, he wouldnt have had to start all over. thank you!
Whenever I feel that something is off… Usually is triggered by me being overly enthusiastic with yard work or some new activity. I try to rest ( nap) immediately after activity for 30-60min. Normally muscle pain (or fatigue ) should go away. Sometimes it takes 2-3 days. If it takes longer, then something is not right and I have agitated ( awaken ) PMR . Then I try to add to my dose before it gets out of hand. How much is a a big question. If it is “mild” I will try 1 or 2mg… If it is relatively serious I may try +3-5mg for few days…
I made a mistake recently in June this year and waited too long ( because I had upcoming appointment with rheumi) and it took me several months to recover. I was at 3mg. Had to go to 9mg for a while and I am still +2mg from the level I flared up.
Don’t be afraid to try things, keep good notes. You have to find what works for you.