How to Slowly and Safely Taper Off Prednisone but ... no set rules.

I will! I have a big event this weekend, once through that I going to ZERO!

For those wondering about a safe protocol to taper prednisone, it's worth reading the “British Society for Rheumatology guideline on diagnosis and treatment of giant cell arteritis: executive summary.” You can find it here.
https://academic.oup.com/rheumatology/article/59/3/487/5714025
There's also a U.S. version of this guideline, but I prefer the UK version because it's more gradual. You'll want to look at tables 1, 2, and 3 for the tapering information.

My rheumatologist uses the U.S. version of this table, but I like the UK version better because it's slower.

Personally, if I can get down to 5mg of prednisone without symptoms, I will probably stay at that level. At 82, the mild symptoms of “Low Dose “ prednisone do not justify the risk of future flares. That’s just my personal approach.

What dose of Prednisone are you currently taking?

What if you can't get down to 5 mg of Prednisone without a relapse ... then what?

in reply to dadcue.

My rheumatologist and I agreed in August that I had a full relapse. We started at 20 mg and worked down. He prefers a faster taper, but it has failed three times since August. I've just moved back to 20 mg for two weeks, and then I'll move to 15 mg until our appointment in April. My last failure was at 7 mg—so close, yet so far. Hopefully, I'll reach 5 mg on the next taper.

So, what if I can't get to 5 mg? Well, in 2019-2021, I eventually got to 0 mg and was symptom-free for almost three years. I believe I can get there again. However, if I get stuck at the 6-7 mg level for a year or so, I'll probably agree to adding Actemra.

"My last failure was at 7 mg—so close, yet so far."
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I used to think it was "my failure" when I was unable to taper off prednisone. When I took steroid sparing medications ... it was always the steroid sparer that failed and it was discontinued.

I started asking myself why prednisone never failed. When I read the following report I started to realize prednisone does fail. It all depends on one's perspective.
https://www.healio.com/news/rheumatology/20190405/prednisone-tapering-fails-in-most-patients-with-giant-cell-arteritis
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With this in mind ... I don't think it is the tapering method that fails and doesn't work. There has never been a tapering method that has been researched that works well except maybe a slow taper is better. Maybe a slow taper gives PMR/GCA more time to "burn itself out."

Tapering slowly is because of the problem with adrenal suppression and not necessarily disease control. It seems to depend more on what people consider a "success' to be.

A personal success, a treatment success, a tapering success and even whether or not taking Prednisone forever is a "symptom management success" are all different ways to think about success.

I’m doing exactly the same. Currently at 7.5, tapering into 7.
I know everyone is different, but how did you do in the 7 towards 6 range? I’m going on a big trip abroad when that is supposed to happen and wonder about staying at 7 because of adrenal “wake up” symptoms during that time period.

From what I’ve found on the web, relapses are common in the 5 mg to 7 mg range. This happened to me at the 6 to 5 transition. I resumed the 7 mg dose with relief and then tapered at 0.5 mg every 4 to 6 weeks with good results. I am down to 3.5 mg now and stable. Slight shoulder pain with weight lifting that improves with warming up but is most likely due to PMR.

I had an interesting experience yesterday. I'm currently at 7 mg. I started that dose last Friday, having tapered down from 8. I'm also injecting Actemra once a week. I have PMR and GCA. Yesterday I felt like I almost had more energy than I could handle. It felt like I had drunk a whole pot of coffee, even though I only had my usual cup of Earl Gray tea for breakfast. I'm wondering if that could be a sign of my adrenals waking up? I've been under treatment for 8 months. I'm currently tapering 1 mg every 2 weeks until I get down to 5, and I stay there for a month. My doctor hasn't told me what happens after that.

Thanks for your response. Based on what I’ve read from others, you may want to go to.05 in your tapering at this point rather than a whole point. I only suggest this because many people say they get flares around 7 and have to increase dosage.
Also energy is not one of the symptoms of adrenal wake up, but more fatigue, almost like “getting the flu” kinds of symptoms.

Regarding the taper, Actemra supports a faster taper, especially if your inflammation is primary due to interleukin-6, which Actemra and Kevzara block.

Also, my understanding is that the symptoms you list, like fatigue, are a sign that your adrenals are either not waking up (not producing cortisol), or else not producing enough cortisol to compensate for the lower prednisone dose. Here is what I just got from a google search:

"Experiencing increased energy levels can be a positive sign of recovery from secondary adrenal insufficiency, as it indicates that your body is producing more cortisol and regaining its normal hormonal balance, which is often characterized by fatigue as a primary symptom; however, it's crucial to consult your doctor to confirm this and monitor your progress through blood tests."