Still confused about tapering

To add to the discussion on how to proceed tapering: Is the only marker to reduce Prednisone Pain? How about Lab Test results: Eg; Sed Rate, White & Blood ,C-Reactive Protein & many others?

for me labs are not the thing... my CRP normalized quickly. Important not to treat lab values and treat the human experience. Lab values can help if there is uncertainty.

What is your tapering schedule - how much are you reducing by and how often?

@michcan1, Do you keep a daily log with your dose and your level of pain when you first get up in the morning? It might help when you discuss a tapering schedule with your rheumatologist. You mentioned the PMR pain was about 95% symptom free at your 20mg starting dose. My rheumy had me go longer without tapering if my pain level was above what I considered too much (anything above a 2 on my pain scale of 0 to 10) or increase my dose to half of what my previous taper down was if it was greater than 2.

My schedule was supposed to be: 20 x 2 wks; 17.5mg x 2 wks; 15mg x 2wks; 12.5mg x 2 wks; 10mg x 2 wks and then decreased by 1mg every 4 weeks. I tried 13mg but my body was not happy so I went back to 15mg. I'm now stuck at 15mg and if that is common then I won't worry. I'm creeping up to 2-3/10 on the pain scale so quite reluctant to go down further. How long do some people stay on same dose when it's close to the starting dose? Super appreciate the tips.

I think that's a tough one just because each of us are different. My rheumatologist was super helpful and gave me scripts of prednisone in 20, 10, 5, 2.5 and 1mg. When I was struggling around 5mg he shared with me one of his patients took over a year at 1mg to taper off. My first time with PMR I spent the last six months tapering between 1mg and 1/2mg until I could finally stop taking it and my morning pain was minimal - less than 1 on my scale but still a little achy until I got up and started moving around. If I remember correctly my first time I tried tapering every 2 weeks and it sometimes stretched to 3 weeks to a month to switch to my next lower dose. I also had a few times where I had to increase the dose but when I did that I didn't go all the way back to the previous dose. Instead I bumped it back up to half of what I tapered down so that I still was making progress with the tapering.

Some folks have had good luck with a super slow tapering plan:
-- Dead slow and nearly stop reduction plan (DSNS - Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

So sorry that you have joined the PMR ranks.

I taper independently of my rheumatologist. Half a milligram every 2 weeks seems to work for me. I started at 20mg last December and I am at 2.5mg as of today. I've had ups and downs - a few hiccups along the way.

My doctor wanted me to taper faster, and I had a terrible outcome the first time I tried to taper like that. He also wanted me to try methotrexate a few months ago. I declined. My method, slow and steady, works for me.

Pain is tolerable for me on the lower doses. I think Yoga and acupunture help tremendously as well as a clean diet.

Everyone is different, I feel lucky to be on 2.5mg. I just dropped to that today, so I plan on a lot of TLC the next few days. If I can't handle the discomfort, I have no qualms about going back up 0.5mg.

GOOD luck and listen to your body.

Yes, I call them "numbers on a page". When they said I had anemia and scheduled me for a colonoscopy, I demurred. I found out the test for anemia also indicated another lovely pmr condition where red blood cells are destroyed at a greater rate than normal. Blood tests are sometimes useful and sometimes not, but always a blunt instrument.

My new rheumatologist (I fired the first one after an awful start) has me supplementing the Prednisone as with a Meloxicam at dinner. I resisted at first but it made all the difference. She also encouraged me to do Tylenol as needed when I need it - usually that's for a day or two after lowering the dosage. I'm
now at 10mg after starting in 9/23 at 20mg and losing the first 6 months with the "bad" rheumatologist.
Experimentation has been key!

Most of us can relate to your dilemma, there's the ideal world according to the treating Doctor and there's the harsh reality that each of us live everyday. Two different worlds in many cases! I am very sensitive to Prednisone and through lots of trial and error discovered that the only way I could reduce the dose and keep functioning was by a quarter of 1mg every week. I also had to split the dose, you'll find a lot of discussion on that and rely on paracetamol as needed. It has taken 14 mths to get to 2.5mg and I'm reducing a lot slower now, still living with pain but getting on with life. For me a gluten free diet and low stress lifestyle are very important