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

@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 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.

Update: After 3 wks at 12.5 mg (following initial 6 wks at 15), I dropped to 11.25 today. My thoughts, about these 3 wks in order of relevance. I hope people will jump in where I have asked questions.

1. Physical exertion significantly above my daily norm (which is low) results in almost immediate head-to-toe pain--what I used to call "being on fire." This has happened twice in the past 3 weeks. The first time it laid me low, and although it was gone the next day, the effects lingers for another two days. The second time, I lay down, took a couple of Ibuprofens, did my gentle PT, and was okay again in a couple of hours. What is this?

2. I had a couple of low-energy days, where the nice prednisone drive seemed gone, but the rest of the time, no matter how I rated my pain levels, the fatigue and lack of drive that have plagued me previously remain an unhappy memory.

3. A couple of physical issues that I do not identify with the PMR were more obvious at 12.5 than at 15: lower back; left leg. My hips were also stiff most mornings (not sure if that is PMR related or not). I've decided to use my shoulders as a good measure of flares (for now), as I am 100 percent sure that my shoulder issues were PMR. Happily, I had next to zero shoulder pain for this 3 weeks. In fact, the ongoing rehabbing of my left shoulder, damaged by a prolapsed biceps tendon and who knows what else, has shown excellent progress (it's 90% recovered and feeling STRONG).

4. It didn't rain much, so I have no idea if the weather did or did not previously cause aches/stiffness.

5. No matter how I feel during the morning, I always feel my best starting around 4 PM. This is a red-hued flag for me, as this phenomenon was one of the first hints that I might have PMR several years ago. I read it as a sign that the PMR is still lurking. Yes / No?

6. Things I've settled on to log daily: morning stiffness, shoulder status, pain level and location, steps walked, my own rating of 1 to 10 of how I feel. Any suggestions for other trackable?

7. I've checked with my docs and tweaked my supplements to try to minimize prednisone side effects. I'm going with Magnesium, Calcium, K3, D3, C, and chromium picolinate.

So is that "symptom free?" for two or three weeks? Hard to tell; I have a lot of other stuff going on. If I judge by my shoulders, yes, definitely. If I judge by energy levels, yes, definitely. If I judge by my hips, meh, it comes and goes--but I have SI issues and muscle damage from nerve damage, so I'll note the stiffness but not use it as my measure of "symptom free" at this time.

FTR, I have been on a Mediterranean diet for 10 weeks, and am doing extremely well. Obesity has been a life-long issue for me, and the PMR + L4-L5 nerve problem sent me soaring towards 300 lb. The thing I bless the prednisone most for is that I have had the drive to do weight management. Blood sugar had been dropping, BP is stable (with meds). I'm on Mounjaro, which I find a useful tool. I don't weigh, but I'm at the nice stage where clothes that were too tight are falling off. Strategizing to continue weight-management through whatever the taper brings is high on my agenda.

I'm going to be especially watching hip stiffness, reaction to exertion/stress, and energy levels this first week at 11.25.

So that's me, 9 weeks after "official" diagnosis.

@p0rtia
Sorry….its a roller coaster of speed bumps for us all.
There are no rules for this road trip. You are your own best advocate. It’s up to you to make sure your dr. Knows how you feel based upon the knowledge from your journal. Do it often, you are not a pest. Your pain NEEDS to be addressed .
#6…yes.keep,the daily journal pain level, ALL medications, activity, diet
You must
if I understand you have only been diagnosed for 9 weeks.
Your tappering schedule is EXTREMELY fast compared to myself and what you read on this blog. My Dr. made it clear that I should NOT TAPPER until pain free for 3 weeks.
We are all here for you. You can do this.

@tweetypie13 Thanks for your reply. It has helped me pinpoint a question that I ponder daily:

What is "pain free?"

I have not been pain free for over fifteen years. A long string of muscle and joint injuries, chronic lower back pain whenever my weight got too high, crushed nerve root that has disabled me twice, SI joint pain. Etc. So I naturally seek to separate out the residual aches from, let's call it "life", and the PMR. Do other people do that?

So I'm taking my best guess at "pain free". Your helpful reply implies that if I have a reaction to strenuous exercise, then I am not "pain free." I hear you on that.

My sense is that I had PMR for over two years before I got my official diagnosis. That's a long time. My symptoms were confused by statin-induced myopathy, which also hits the shoulders, and the crushed nerve root. Because I've had what I now recognize as PMR symptoms for so long, I don't have a real expectation that the prednisone is going to burn out any time soon.

But compared to how I felt pre-prednisone, I feel terrific. And I want to know when that "terrific" is gonna end. I'm guessing a prime candidate for a major flare at the 7 to 8 mg wall.

Maybe I'm dead-wrong, but I don't think I'm rushing. If I had followed my rheumy's directions, I would have been at 10 mg pred 3 weeks ago. I am in no hurry. I admit I am experimenting: I want to know if there is a difference between 12.5 and 11.25. If the PMR symptoms get worse, I'm gonna bounce back up without hesitation. Having read the accounts of those who had to go up higher than they started, I'm aware of the pitfalls. I also think I am a good future candidate for Kevzara.

Yes, I feel that the PMR is still there, underneath. Yes, I feel that the 15 mg pred masked a lot of my other achy/stiffy issues that frequently make themselves known now that I am so much more active.

Thanks again for the feedback. You rock.