PMR, Prednisone, honest opinion
Posted , 13 users are following.
3 years into PMR, have tapereded only to 7-1/2 at present. Just tried dead slow method to try 7 and have flared after 7 days. First symptom of flare really was increased brain fog. I looked at my detailed calendar which I have kept for the past 3 years and these past months..January, February and going into March are practically identical!!! I was at same dose...for various amounts of time, all reasonable 6-12 weeks approx., and each time I tapered I flared! Had to go back up to 9m at one point. What am I not getting? Tapetinag makes me stupid...even when I take notes and issue reminders to myself on my iPad! Is it possible to be in this PMR/prednisone cycle forever?
0 likes, 31 replies
julian. kathy67492
Posted
yuk, groundhog day .....
and a bit contrary to my brain fog experience - less pred, less brain fog. Though the fatigue is all over the place, comes and goes.
something odd. My understanding of "dead slow nearly stop" is:-
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
etc
which makes a flare after 7 days a bit odd.
Sometimes useful to ask silly questions. Is the dose what you think it is? (is it really 7 and 7.5). Is it really DSNS? What happens after 13 days of DSNS? What are the other symptoms of flare? Are you getting enough exercise? And so on.
Plus, Nick's bit about kidneys taking up the load.
honest opinion .... a bit odd.
kathy67492 julian.
Posted
It is the first time that I noticed increased brain fog when tapering. Actually I first did the every other day regimen because that works better for me. When I did the DSNS method, after 29 days and 3 less mm of prednisone overall, I flared!! I have 5m, 1m and 2.5m of prednisone so I am confident about the dosage. I get regular exercise...tennis and golf, plus..try to eat right, but sometimes not so diligent. I do let the activity level get away from me...now I am back to 7-1/2m and forced to slow down to "regain what I lost". Appreciate your input!
julian. kathy67492
Posted
the maths checks out ok.
We (all of us) seem to be quite sensitive to small dose changes. I noticed when I got to 3.5mg/day a slow return of some symptoms which eventually got out of control. I'm now trying to get from 5 to 4.5mg. But overdid things a couple of days ago. Undoing some very tight bolts for a couple of hours. I knew I shouldn't have .....
I guess your brain fog confused me. The sensitivity to very small change in dose seems to be common. Frustratingly so.
Anhaga kathy67492
Posted
EileenH Anhaga
Posted
kathy67492 Anhaga
Posted
guess that puts me right where I am now...after about 7 days of tapering from 7-1/2m to 7m I flare....the time is not right. I am so afraid of the taper now because I will have to work my way back. Think I will stay here @7-1/2m for a couple of months. Thank you for your input!
EileenH kathy67492
Posted
That is NOT the DSNS programme. It starts with 1 day of the new lower dose, 5 days old dose, 1 day new dose, 4 days old dose, the opposite of what you did - that stage happens half way through.
It doesn't alter the fact that your body was telling you it wasn't time - but it is not the DSNS approach.
kathy67492 EileenH
Posted
Anhaga kathy67492
Posted
In the interests of clarity I've copied the dead slow nearly stop plan as posted on health unlocked forum:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
I always write down every day's dose and have kept the calendars when they are used up so I'll always have a record of my progress (or lack of it). I used to pre-record the expected taper so I'd know each day what my dose was to be. I have to say there were many erasings as I tweaked the dosage according to how I felt. In early days I was usually shortening the length of the taper!
This can be shortened, a lot of us are able to use a 4 day start stop, at least until getting to the really low levels. It can also be extended by repeating each stage, although I venture to suggest that if this is necessary it could be a sign that one isn't ready for that particular taper - at least until one is down to the very tiniest of doses and nearing the finish line.
julian. Anhaga
Posted
by concidence ... after 27 days of DSNS 199.5mg would have been consumed instead of 202.5, which is 3mg less.
Kathy, there's following posts, and also a sticky at the top of this forum on DSNS.
EileenH julian.
Posted
Yes - but you got there slower so it wasn't such a shock to the body...
Anhaga julian.
Posted
Julian, I'm mathematically challenged so I have no idea how you arrived at those figures nor what the starting and ending doses were. I have to say I've never tried to figure out what my cumulative total is, it's quite enough for me to be getting on with making the daily dose smaller over time.
kathy67492 Anhaga
Posted
It is truly staggering that I tried to do the "DSNS" method twice, both times incorrectly...REVERSED AND BACKWARDS!!! Regardless of what I read and perceived, I too have extensive written notes, as well as on my iPad...so now I can review my mistakes! I was doing:
1 day old dose, 6 days new dose, etc!!!!
No wonder I prefer to blame the prednisone!
julian. kathy67492
Posted
sometimes people write 3mg/day and sometimes 3mg. Most times it doesn't matter, we assume mg/day. But sometimes it does.
EileenH kathy67492
Posted
You are not getting that you are not tapering relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did. As long as the underlying autoimmune disorder that causes the symptoms we call PMR is active we will need some pred to manage the inflammation. In your case it is obviously 7.5mg - and yes, 1/2mg can make the difference. 7.5mg is just enough to keep the inflammation under control - but only just so after a few days at the new lower dose - the inflammation drip has filled the bucket and overflowed. Back comes pain and stiffness.
A study done in Italy a few years ago about using methotrexate in PMR found that about a third of the patients they followed up 5 years later still needed some pred after 6 years. It was said some years ago that about a quarter of patients are off pred in under 2 years but then remain at an increased risk of having a second episode. About half require pred for up to 4 to 6 years and a quarter of us need it even longer, a few for life. After just 3 years you are in relatively early days compared to most of us.
This is a level that poses a problem to many people - as someone has already said, your body is also having to start producing its own corticosteroid, cortisol. The entire system is in flux, it isn't JUST adrenal glands, it is pituitary, hypothalamus, thyroid and other organs. As far as cortisol is concerned the primary sign that it isn't being topped up is increasing fatigue and then the synacthen test Nick mentions might be worth trying - but again it is early days for that I think - being unable to get BELOW 7mg might suggest a test is needed but the first approach is to slow down the reduction. The synacthen test does show your body IS producing cortisol, it shows if the adrenal glands are CAPABLE of doing so and the fault may actually lie elsewhere so that ACTH isn't being produced to trigger the adrenal glands. The test uses ACTH in the injection - so the rest of the set-up isn't being tested.