Tapering off of Prednisone

I began my journey 9/24/21 with 40mg Prednisone fast forward to 11/1/22 @ 3mg AM 1mg PM and the onset of neck/shoulder pain, Thundering heart beat in the AM and minor balance issue. Received the follow from my Rummy

There are 3 concerns when tapering prednisone to doses lower than 5mg/day:
1. Recurrence of the inflammatory disease (PMR).
2. Steroid withdrawal symptoms (which should be self limited and improve if given enough time, though it may take very slow prednisone tapering).
3. Adrenal insufficiency (because the dose of prednisone is lower than what your body needs to support electrolyte and fluid management).

We did a complete blood tests including CRP, ESR and a morning Cortisol test.
Fortunately all test indicated normal ranges and most likely my symptoms are Prednisone Withdrawal related. This was my introduction into the complication of “withdrawal”. After searching the WEB and reading a lot. My conclusion: it is often very difficult to distinguish what is happening in your body when withdrawal symptoms often mimic PMR and Prednisone side effects. After blood test and further discussion with Rummy and a 2 week “stabilizing “ 4mg PM Prednisone - This Sunday 12/18/22 I will be continuing my taper using the plan you mentioned.

— Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan
Thank you all who contribute to our journey.

Hi John, your comments are always very helpful, and what I'm learning is how tapering is so personal.
Having started at 40mg, 20,15, 10 then 1 mg less per month until 6mg when I started tapering by 0.5 mg per month. My Rheumatologist is very keen on a slow rate of tapering and has suggested I now taper down to 0 by the end of June '23. I'm trying to work out a schedule and am wondering if there is any evidence at what stage in approaching 0mg is there more likelihood of a flare-up.
Thanks for all your advice,
Ferse

Hi Ferse, Wished I had an answer for you. From my experience, I had more trouble tapering off my first time around where I went back and forth between 1mg and .5mg the last six months before I could be off prednisone with no real pain. The second time around I didn't have that problem because I made some conscious lifestyle changes limiting sugar, processed foods and inflammatory foods. plus more exercise. I recently saw the following tapering plan on HealthUnlocked and think it sounds like something that would be good to try if you run into any flareups while tapering.

-- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

Thanks John,
for a passing on the "Dead slow.." theory of tapering, so clearly and so well documented.
I'm going to give it a try.

Best wishes,
Ferse

You should discuss this with your rheumatologist. Many rheumatologists will refuse to write for prednisone prescriptions for the Dead slow approach.

I can't say the ultra slow approach worked for me but my rheumatologist was open to any ideas. She maintained that PMR was my active ongoing diagnosis but she still encouraged me to taper off prednisone. The Dead slow approach was acceptable as long as I was making progress. Unfortunately, I still flared and had to increase my dose.

The people who promote this approach have no scientific evidence that it works. My personal feeling is that you should try it and see. Whatever works for you is all that matters.

When I first started taking prednisone for PMR, the medical advice was to taper off slowly. How slow was an ongoing question that has yet to be determined. After more than 12 years of taking prednisone for PMR, my rheumatologist said it was too long!

Good luck with whatever tapering method you use.

That's why my Mayo rheumatologist told me to listen to my body and not taper down if the PMR pain is higher than what I can tolerate...which is around a 1 or 2 on my pain scale. He also advised that I should keep a daily pain and dosage log so that I could see any patterns.

Hello, am new to the group. Have been reading this thread in particular as I am trying to wean off of prednisone and still maintain a decent quality of life. I was diagnosed by my GP in early 2017 and started on 5mg, Had bumped to 10mg due to a flare up, and have been slowly weaning off with intermittent bumps due to increased pain. I had been having symptoms for at least 4 months prior to diagnosis, thinking I had injured my back, neck, and shoulders at work (former nurse, could have happened). I took way too much ibuprophen trying to work and keep up with other obligations. I damaged my kidneys and can no longer take NSAIDS. It took 6 months to get an appointment with a rheumatologist ( rural area, 1 practice with 2 docs in a 150 mile radius). He has told me the last 3mg are the very hardest to wean off. My brother also had PMR, is off meds with no flares in several years. He told me i would have pain the rest of my life and needed to decide how much pain I could tolerate to get off prednisone. There are days I can hardly move, needing help to dress, get things off shelfs. My doc wants me to wean down to 1mg, which I've put off until after the holidays. Stress definitely affects me physically. He told me I could play around with the dose, take 1.5 one day, 1 the next. Has anybody come across a weaning strategy that seems effective?

My problem turned out to be #3 adrenal insufficiency which can only be established when you can maintain a prednisone dose of approximately 3 mg. Symptoms of adrenal insufficiency seem to surface when you get to about 7 mg of prednisone and gradually get worse. The symptoms mimic PMR so I thought I was having a flare anytime I got under 10 mg of prednisone.

Just for clarity, prednisone replaces the cortisol that your body needs. A low cortisol level has widespread symptoms including muscle and joint pain. Extreme fatigue was what I noticed the most. I was used to having muscle and joint pain and I thought it was PMR. In a sense, it was PMR because cortisol regulates inflammation. When my cortisol level got low as I decreased my prednisone dose, my inflammation level increased so it was called a "flare."

The following link describes what cortisol does. Cortisol regulates many things. Prednisone is not a good substitute for cortisol.

Hi marmak ... I'm a retired nurse. I took prednisone for more than 12 years so I could still function as a nurse. According to one rheumatologist, I have a full range of rheumatology problems including PMR.

I rarely could get below 10 mg of prednisone. You are doing much better than me. Your weaning strategy seems effective to me by comparison. I did a lot of experimenting with tapering off prednisone but I wasn't very successful.

One rheumatologist said if I was only taking 3 mg of prednisone he wouldn't care so much. My history of more than 12 years of moderately high doses of prednisone daily wasn't acceptable. When a biologic was tried, I tapered off prednisone in 7 months. Much of the seven months was to give my adrenals some time to recover.

I still take the biologic so I can't say I'm cured but I might be in remission. I have been off prednisone for 3 years except for a couple of mishaps when I needed some prednisone for a couple of months.

I live in Iowa which is a rural area too. Fortunately I worked at a university hospital that has a relatively large rheumatology department. When PMR was diagnosed, it took three rheumatologists to get a consensus of opinions.

I think the best strategy to taper off prednisone is to keep trying.

What is a biologic?