PMR and really bad day
Posted , 14 users are following.
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,
0 likes, 27 replies
Bethune Twopies
Posted
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.
barb30898 Twopies
Posted
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.
Twopies barb30898
Posted
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.
Twopies barb30898
Posted
meant to say thank you for your comments!
karenjaninaz Twopies
Posted
I take that as a sign to rest more. That seems to help a lot.
karenjaninaz Twopies
Posted
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".
Twopies karenjaninaz
Posted
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!
amkoffee Twopies
Posted
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.
EileenH Twopies
Posted
I've obviously got the measure of my PMR - I rarely overdo it enough to suffer next day (except if I have to haul luggage around!). If I do though I also rarely try taking extra pred as it won't help over-use pain and stiffness. I know the signs of a flare for whatever reason - and THEN I take a bit more pred.
Yo-yoing the dose is when you reduce too far and allow a flare to develop and then go back to a higher dose to manage the PMR symptoms - and do that repeatedly. It tends to happen if you reduce fast or in big steps, you overshoot and don't really know where the borderline was., so you go back up too far and repeat the error. That's why we bang on about reducing slowly and in small steps so you can identify the dose you need without swinging about all over the place but creep slowly to the final endpoint.
Rudivl Twopies
Posted
This has been a really helpful discussion to read! Currently using the DSNS method and touching on 11mg. This last week I've been feeling fatigue kicking in and pain levels rising. In previous drops, I have just pressed through but this feels a bit different and I'm wondering if it's a flare or just withdrawal? I've never been totally pain free and also take azathioprine which has helped me to begin the taper after a year on 16mg. So tricky to figure it all out! We press on! RDx