Day 4 of prednisone and happy! Stay at 15 or go up to 20?

@stonewheel
I take LDN at night. I'm only on 3mg, but I've heard of people being on 4.5 or even 6mg. I had to do some work in the yard yesterday and I definitely overdid it. I was afraid of how I would sleep and feel this morning, but I took my LDN, applied a bit of bio freeze and slept well. I woke up a little sore and took my 5.5mg prednisone and feel surprisingly good. I'll take it easy today but I'm pretty confident that LDN helps me sleep and recover.

@kjoed53
Happy for you.

Update: Week 1 at 12.5 under my by belt. Keeping a detailed log of aches and pains + PT and exercise. In summary: no flaring; ongoing improvement in range of motion and strength. Feel lucky and so damn good (relatively speaking).

Having many, many thoughts that are not so cut and dried. Here is my typical stream of consciousness these days: [Rheumy recommended 2 to 3 weeks at 12.5. I've read other opinions that say go 3 weeks, go a month. I've read studies that say (paraphrasing) if you're stable, a week is enough. So maybe drop 1.25 after another week? 1.25 seems safer than 2.5, even though I'm still above the danger zone. Or is it overcautious? What is the harm in dropping to 10? So many people have said how easy it was to go from 15 to 10. ... Prednisone thoughts: I'm worried about side effects; but I'm not looking forward to the day all this nice energy, like I used to have before PMR, goes away. Don't rush. Enjoy the day. ... I'm glad I had the that one day early on when I forgot to take the prednisone and all the stiffness and aches came back in a rush; that is what I think it will be like when I eventually flare, so I'll know exactly what it is. ... I'm so lucky that 15 mg worked for me; that 12.5 works for me. ... I know one thing, when I flare, I'm not waiting around to see if it goes away, I'm upping my dose. Or am I? ]

I find myself wondering if, as I seem to be a pretty textbook case, it doesn't actually matter how fast or slow I go from 15 down to 10. To wit:

1. When I creep below my lowest effective dose I'm gonna flare.
2. That'll most likely be between 8 and 5 mg.
3. I have no idea if what I do now (in terms of slowness and percentage drop) will have any effect on 1 and 2.

Well, I have another week to think it through.

Thanks, all!

@p0rtia go bck thru numerous old messages…..
Your emotions are getting the better of your mind.
You’ve done great, don’t mess it up now with haste.
Most of us find out it DOES NOT work.
8-5 gets harder……
Reminder no more than 10% drop, and stick with it for as long as needed to be pain free. My personal experience was 3 wks usually.
Be prepared, you may have to increase along the way to get over a hump.
You can do,it, you’ve done well so far.

Update: Week 2 at 12.5 complete (Prednisone start date: June 8, 15 mg). An up and down week, mostly down. This surprised me, given the relatively "up" previous week at 12.5. Lots of arm pain and hip stiffness, which mostly resolves with OTC meds. That said, the weather has been rainy, and on the sunny days, I have been more active than I have been in five/six years. After one highly enjoyable and super active 12 hours, I got home happy but on fire from head to toe. Next day it was gone, but it took two days for my muscles to recover. I didn't lose any range of motion, which was good. I find that sitting out in my garden doing slow motion PT is quite healing.

I can't tell how much of this week's issues were from PMR flaring, and how much from the post-activity aches and pains I've experienced half my life. Or how much from the spinal stenosis that has messed up my left leg. Today, my knees are stiff as boards--not something I associate with PMR (or anything else other than age, obesity, and unusual exercise). I note too that I am actually using my arms to do things after several years of not being able to. On the other hand, I am in such better shape, especially my arms, than I was a couple of months ago, that it's not surprising I don't sense any loss of mobility (just aches and that one fiery evening).

The high level of energy I've experienced since I started prednisone sputtered this week too. I had a couple of flat days. Why this would happen in the second week of my taper I have no idea. I'm willing to chalk it up to life, until I see a pattern. Speaking of which, this week I've been aware that pain, if any, generally dissipates after the magic 4 PM witching hour (during my pre-diagnosis period, I was well aware of this weird phenomenon). I'm keeping a record of various things, including pain. Week one averaged 1/10 for pain; this week averaged 3.5 to 4/10.

I'm so grateful I've read here the stories of how others have been affected by and warn against over doing.

So I'm in no hurry to drop my dosage and will wait a third week. I have a couple of less-active days planned, with time for PT, and I'm curious to see what relaxation does to the ache/pain/mood levels. I don't like my biceps being sore.

After week 3 I plan to drop 1.25 to 11.25 and see what happens.

Excelsior

Seems to me you're tapering off pretty fast. Not sure what your goal is here? Find the right dose? Continuing to taper when you know inflammation pain is returning doesn't make much sense to me, particularly if you don't have any alternatives to the prednisone for fighting inflammation. It just takes time.

Now off prednisone myself after 7 months, but only because I went on Kevzara to control inflammation. My experience (second round of PMR in 8 years, beginning when 55) is that it just takes time. You don't want to let the inflammation creep back in at this point -- keep it suppressed.

You're likely going to be on prednisone for at least a year and probably more, unless you transition to an alternative med. I hate the stuff, but once you're on it you've got to ride it out. The PMR is still in there and, I believe, always will be. You just have to learn how not to trigger it once it's suppressed.

@barjohnson62 this is the same experience as I. I was at 8 pred when Kevzara started. As we know Kevzara takes up to 3 months to kick in, Which it did and I had tapered off all pred. There is no “end time” for kevzara. I was 11 months on Kevzara. Stopped it for 2 months, and my numbers went up, restarted kevzara . Now 3 months later at 3 week intervals. If numbers hold, will stay here.

Don’t forget message above…..
“ You don't want to let the inflammation creep back in at this point -- keep it suppressed.”
“ The PMR is still in there and, I believe, always will be. You just have to learn how not to trigger it once it's suppressed.”

@tweetypie13 Thanks for sharing that. I will probably start some sort of Kevzara taper in a few months. Good stuff overall, but hope not to be on it too awfully long. A little hard on the immune system. But will try to take my own advice and give my body the patience this disease requires. Thanks again!

@barjohnson62 I did not think that 6 wks on 15 mg, followed by a drop to 12.5 mg would be considered fast. It's the standard drop, isn't it? Or do you mean I not drop again another 1.25 if I have any pain at 12.5? If so, yes, that is on my radar. I've also considered going back up to 15. My situation seems complicated to me due to my other health issues and increased activity. Gonna see how I feel over the next seven days.

My goal is to find my lowest effective dose.

@barjohnson62 We are all here for each other, it’s a long and sometimes lonely road.