Question about tapering and symptoms
Posted , 15 users are following.
Hello all - I have a question about whether my symptoms are normal during tapering. I'd been on 10mg, tried to taper straight to 9mg - unsuccessful as various aches and pains came back pretty quickly. I went back up to 10mg until things settled down, then went onto DSNS taper. All good until I got to 1 day old, 3 days new - on the third day of new (9mg), everything started hurting again. That was on Thursday. Admittedly, all the pains weren't nearly as bad as things were at the very start of this journey, but are they part of a normal taper, or it is a sign that I'm reducing too quickly for my body?
I'm sure I've read somewhere that it's not uncommon for the body to complain a bit during tapering, but the issue is whether things improve over a few days, or get worse. So I'm confused as to whether to stick it out for a bit longer (how long?) to see if things settle, or if I'm better going back up to 10mg until I get comfortable again and then try tapering by 0.5mg?
0 likes, 39 replies
Silver49 JW89
Posted
I'm sorry to read you are having aches and pains. I taper by a half mg from 10. I wonder if it would be better to try that.
karen81902 Silver49
Posted
Silver49 karen81902
Posted
EileenH JW89
Posted
However slowly you taper you are NEVER tapering to zero - you are looking for the lowest dose that gives you the same result as the original starting dose did. It really does sound as if 9mg is a step too far for your body. It took a few days to get there so I doubt it is steroid withdrawal, it is that the new dose isn't quite enough to manage the daily dose of inflammation, it has built up to the level you notice again.
If it were me, I'd go back to alternate days of 9 and 10 (which is probably the right dose, equivalent to 9.5mg per day). It might need a couple of days of a higher dose to clear out the inflammation but I'd try going back first and only have a higher dose if that doesn't work. But don't let it get worse - or you will have a real flare.
karen81902 EileenH
Posted
EileenH karen81902
Posted
Sorry, badly put - I forgot to include the word "relentlessly" which I usually say.
I mean at any given stage you are not aiming for zero - but the lowest dose that manages your symptoms for now. It doesn't mean that the point you find is the lowest you will ever get - it is the lowest you will get for now. In a couple of months you should try again with a small reduction to see if it works. But it is silly to realise the PMR is beginning to surface but continue to reduce. That
As you do manage to get lower you will get closer to zero - and maybe you WILL get to zero as hte lowest dose. I said "never aiming for zero" (which should have been "never aiming relentlessly for zero"
since many people think that is what they are doing from the start - especially GPs and many rheumatologists because that is what you do after a course of pred for other illnesses.
But if you think you will just keep reducing without a hiccup you will very often be disappointed. Or be convinced you've done something wrong that stops you getting lower when you haven't.
Anhaga karen81902
Posted
Eileen's explanation is great. I want to encourage you by saying that at a certain point although you may not be down to zero, with care you may well get down to a nice small dose which is nearly as good as zero. If nothing else, PMR teaches us patience! It has taken me well over a year to reach that reasonably comfortable dose. Of course I'd like to be at zero, but 4 or 3, or thereabouts, is nearly as good, and if it takes another year or even more to get to zero, or perhaps a longterm holding dose around 1, so be it. Slowly, slowly.... 🐚
mark9992 EileenH
Posted
Hey Eileen, any disagreement I have with what you're saying would be purely semantical, but I can tell you I'm certainly aiming for zero, but without irrational exuberance.
EileenH mark9992
Posted
My aim is not zero - but the lowest dose I can feel well on. If that happens to be zero - all the better.
mark9992 EileenH
Posted
The lowest dose I can feel well on is my initial goal, but my primary goal is remission, game over. Pred is a deal with the devil, and one I'm happy to make, but I doubt its going to end in hugs and puppies if I have to stay on indefinitely.
mark9992 EileenH
Posted
Oh, and yes the, "Here is your schedule" is all I was given. However, even cursory research online shows the likelyhood of many reversals on the way. I think my expectations are set appropriately; lots of bumps along the way and false starts, but with a 75% of remission in 5 years. Sound right?
EileenH mark9992
Posted
You can't AIM for remission - nothing you can do will hasten it. I've done my deal with the devil maybe - but it beats the alternative. I'm obviously one of the 25% - luckily I wasn't desperately hoping for a short course...
mark9992 EileenH
Posted
"You can't AIM for remission..."
It may be a conceit, but I think its a healty one ;-)
JW89
Posted
Thanks for all responses. I'll try alternative 10mg and 9mg over a few days to see if that gets me back to where I was. One more question though... how do you know if symptoms are down to insufficient pred dealing with inflamation levels vs pred withdrawal?
JW89
Posted
I meant "alternating 10 mg and 9mg"
EileenH JW89
Posted
A flare due to insufficient pred to deal with the symptoms usually takes a bit longer to appear and then the symptoms increase day by day.
karen81902 JW89
Posted
karen81902 EileenH
Posted
EileenH karen81902
Posted
mark9992 EileenH
Posted
I just restarted at 10mg and I have a bit of leg and shoulder soreness in the mornings, although that's a lot better than not being able to get out of bed without help. The Rheumatologist is recommending I go down 1mg every 3 weeks, but I've already had PMR with no sign of letting up for 10 months. I'm beginning to thing when I see the nurse practitioner in a week or so that I should suggest 1/2 at a time? Comments? So far I'm handling the pred well. I had a sugar issue, but I've got that well under control.
mark
tpaggs mark9992
Posted
When I started with 16 mg Medrol over 2 years ago, I was able to decrease 1 mg at a time. However, when I got down to about 4 or 5, I had to taper 1/2 mg at a time. This morning I took 1/2 mg and I will take 1 mg tonight. I'll take 2 mg tomorrow and for the next 3 days. IF I am not symptomatic, I will take 1 1/2 mg for 2 days and 2 mg the next 3 days, etc., etc. I tried to do this a week ago but I started getting symptoms and just went back to the 2 mg/ day. I'm trying to taper once again and am hoping for the best. I have to work tomorrow so I hope i'll feel okay.