Has anyone "self-tapered" (increase or decrease prednisone)

Below 5 mg. the adrenals have to pick up the slack and restart producing cortisone. Decreasing Prednisone slowly is a good idea. My experience is that it is difficult to distinguish pmr pain from prednisone withdrawal. I have finished 3 weeks at 2 mg. and dropped to 1.5 mg. but don't have the same energy I did when I started at 20 mg. suggesting to me that my adrenals aren't up to the challenge. It took me 15 months to drop to 5 mg. At 75 years old there are aches and pains that I cannot blame on the lack of meds 🙂

I developed PMR 9 years ago I self tapered from 20 mg/day to 1. I am stuck on 1 mg/day. I have it on both wrist & my 8 fingers . I have been stuck there for 4 years but 1 mg/day helps & I am able to function normally. So 1 a day it is & I do not have any side affects.

I tapered down from 20 mg in July then in November 15mg, dec 10 mg, jan 5 mg and 1mg per month until off mid April. The slower taper at the end was what my rheumatologist recommended and it worked great. I felt a little achy for couple of days after tapering each time but it subsided after a few days and I felt normal.

My Mayo rheumatologist told me I needed to "listen" to my body when tapering my prednisone dosages. He had me keep a daily log with my level of pain (0 to 10) and if it was time to taper and my pain was a little too much to wait for a few days and try again. My first time with PMR took 3 and half years to taper off (started at 20 mg) and the last six months was spent going back and forth between 1 mg and 1/2 mg until I could finally stop the prednisone and have an acceptable morning pain. For me that was anything below a 2 level when I woke up. Each of us are different which why I think it's a good idea to keep a daily log.

I started at 10mg last August after a bout with Covid. I stayed at that level longer than my Rheumy had planned (prefers) because my neurologist was threatening to increase my dosage a bunch. Well that didn't happen so I started down. My Rheumy wanted each taper step to be one month. Her taper was 10-7.5-5-4-3-2-1. That is six months of tapering. Way too slow for me, so after being assertive and agreeing to go back to 5mg if I had a flare during tapering and contact her, I went with a plan that was a little complex but it cut 6 weeks off the timeline. I went from 5 to 4.5 for one week, then 4 for 2 weeks, then 3.5 for one week, then 3 for two weeks. When I went to 2.5 I started shaving a day or two off each level. It worked for me but I actually had to write down the plan on a calendar in order to stay on course. My doctor was not at all in favor of my plan but had to admit that staying at each level for a month would not guarantee success. Current best practice is one month at each level.
Part of what you have to remember is long term, 2 weeks or more, of oral steroids will put your adrenal glands to sleep. They normally publish natural steroids your body needs every day. The tapering down is very much about waking up your adrenal grands to kick back in. Tapering too quickly can cause withdrawal symptoms and some people need hospitalization to help rebalance your internal systems. Many of these withdrawal symptoms overlap with PMR symptoms so it might be difficult to understand what has happened.
Here is what Drugs.com says about tapering steroids. Please note the disclaimer they have at the end of their web page. Tapering is a very complex topic.
https://www.drugs.com/medical-answers/good-prednisone-taper-schedule-3570111/

I have had 2 flares since I stopped steroids for treatment of PMR two years ago. My original diagnosis took 6 months of pain and discomfort. I felt better prepared for the flare. My flare started in knees and moving to my shoulders. I was using dexamethasone for treatment. I did 2 days of 2mg dex(about 10-12mg pred). I did two days at 1mg(about 5-6 pred) and my last day at .5mg dex. Then stopped. Pain was gone. Pain actually stopped the first dose. I used the philosophy that it takes a couple of weeks for your body to stop cortisol production. I felt a little lethargic day one but nothing serious. I have done this on both flares. Just my self treatment. I aslo weaned myself off steroids(Dex) after 6 months 2 years ago. Some pain as you taper but its worth working through it to get off. Again this is not a Dr advised approach. I have not seen the Dr.

I adjust my prednisone according to what seems right for me in my slow taper journey. My rheumatologist is fine with that. I check in with him in person once every 3 months (I’ve had PMR for 18 months)

I tapered down myself.

I started at two weeks down one till I got to 6mgs an then 1 gram a week until off

I am in miserable pain, but refuse to go back on steroids.

Tried CBD oil an it seemed to help, but did not last. .

Now taking Tylenol. No matter what you take I feel it will do damage somehow. So i choose Tylenol.

75 yrs old. It’s ruined my life.

Hello, I am sorry to read your comment. PLEASE read my comment link below. Your pmr is still active and steroids will stop it doing further damage. Tylenol cannot do that.
https://connect.mayoclinic.org/comment/1062007/

My rhematologist had no problem with how I tapered my prednisone dose down. She gave me general guidance about tapering off prednisone. There is no single best way of tapering off prednisone. It mostly depends on how you feel personally about the pain you experience. It is mostly about your personal pain tolerance combined with your tolerance for prednisone and other medications. There are infinite combinations of the two tolerances so there is not a single best way for everyone to taper off prednisone.

What my rheumatologist didn't always like was when I increased my dose. She was very compassionate and understood the pain I was having. She never blamed me for not being able to taper off prednisone in a timely fashion. She only wanted me to explain why I increased my dose. She simply adjusted her recommendations and time frame for being off prednisone. She never called me "noncompliant" like another rhematologist did.

My rheumatologist truly wanted what was best for me. She knew that being off prednisone "as soon as possible" was better for me than long term prednisone use. I had the same understanding so we never had any disagreements. We were both concerned when my dose was going in the wrong direction.

When adrenal insufficiency became a problem, my endocrinologist made different recommendations but the goal to be off prednisone as soon as possible remained the same.