Prednisone for over a year along with Kevzara for last 5 months

I think thats a perfect answer DadCue. Exactly as I see it. I just see so many on here that get stuck at 5mg or less. I was lucky my cortisol snapped right back so I was off in 6 months.

How long were you taking prednisone? Some people have resilient adrenals. My adrenals weren't so resilient after being on prednisone for more than 12 years. I needed the assistance from Actemra to enable me to reduce my prednisone dose to 3 mg.

I didn't feel well on low dose prednisone and there were times I wanted to increase my prednisone dose. I just kept telling myself, PMR inflammation was being controlled with Actemra. I did have some pain-- more than niggles. However, I didn't think I would have a major flare of PMR.

After being on 3 mg of Prednisone for 6 months, my cortisol level rebounded and my endocrinologist said my cortisol level was adequate. With an adequate cortisol level, my endocrinologist said I didn't need to taper from 3 mg to zero and I could simply stop Prednisone. I was still on Actemra so I didn't have a flare of PMR when I stopped Prednisone the first time.

I had a flare of uveitis almost immediately after stopping Prednisone and had to go on 60 mg again. Fortunately, I was able to taper off Prednisone again in a couple of months. Actemra isn't ideal for the treatment of uveitis my ophthalmologist says.

So if I understand.. is the pace of adrenal recovery the driver for pace of prednisone tapering?

I started on 4mg of dexamethasone. I did that for 3 days with no pain. Immediately dropped to 3mg for 3 days and no pain and then dropped to 2mg with minor pain. I stayed the course of 2mg for 2 months then dropped to 1mg. some pain but I stayed the course. At 4 months I dropped to .5 and the pain was back. I went back to 1mg and stayed for 2 more months . At 6 months I dropped to .5mg for about a week and then stopped altogether. Some pain for 2 or 3 weeks. This was 2 yrs ago. I have had two flares. I did a 5 day dose of 3 then 2 then 1mg and stopped. Pain was gone both times. Dex is about 5 times stronger than prednisone. so a 3mg would be 15mg prednisone. I just think my body produces tons of cortisol and histamine. I can get a mosquito bite and my whole cheek will swell. I have or had asthma. I think my adrenal glands are just overworked.

The way I understand it is the following:

Only after 10 mg do you need to slow down the pace of prednisone tapering. A prednisone dose of 7 mg is roughly equivalent to the average amount of cortisol the adrenals should produce daily. Keep in mind that the adrenals should be capable of producing 10 times that amount of cortisol during stressful situations. Stress seems to be the trigger that causes people to have flares. Cortisol is the "stress hormone" so a cortisol shortfall during times of stress tends to create problems.

When someone is stressed their cortisol need increases. If the adrenals don't pick up the slack, more prednisone may be needed. During severe stress, people are at risk of an adrenal crisis if they have adrenal insufficiency and don't receive steroid replacement therapy.

All this assumes the underlying disease activity is no longer active and people are able to taper down to 7 mg. After 7 mg people should go slow but there is no universal tapering plan that will work for everyone. The length of time people are treated with prednisone largely dictates the rate of adrenal recovery.

I was unable to get anywhere near 10 mg for ten years after PMR was diagnosed. There were other factors so not just PMR that prevented me from tapering lower than 10 mg.

What worked for me after Actemra was started was to stay on 3 mg of prednisone "for as long as it took" for my cortisol level to improve. After my cortisol level improved, my endocrinologist said tapering from 3 mg to zero was no longer needed. I tapered anyway but it only took me a couple of weeks to taper from 3 mg to zero. About 8 months was the period of time I stayed on 3 mg of prednisone. while Actemra prevented a PMR flare.

Fascinating balancing act.

Especially tough to balance when I had a flare of uveitis almost as soon as I tapered off Prednisone the first time. My ophthalmologist put me back on 60 mg of Prednisone again. That was when Humira was tried because it was thought to be optimal for uveitis. Prednisone must have prevented flares of uveitis the entire time I took Prednisone daily for PMR. My last uveitis flare happened before PMR was diagnosed.

Humira didn't work so well for PMR. I got stuck on 15 mg of Prednisone when I tried to taper off after the uveitis flare. I was not on prednisone very long so after Actemra was restarted, it only took me a month to taper off Prednisone the second time.

More frequent Actemra injections prevented another uveitis flare.

Under the rule of it’s always something… I’m tapering off ophthalmic prednisone right now. Had cataract removal the last two weeks of April, and the NSAID eye drops to control inflammation had to be stopped because it triggered a relapse of microscopic colitis. In my case it is sensitive to nsaids and PPIs - both of which I took for years. I just didn't dream that freaking eye drops were substantial enough to cause a relapse of MC.
I also had prednisone eye drops so leaned on that and now i am tapering - based on frequency not dosage. I had some eyeball cramping today and a feeling that something foreign is in the eye - though of course it's not. So maybe I’m getting experience I haven't had before with eye inflammation.

I just wish to add my thoughts about the rule that it's always something.

In my case "if it wasn't one thing -- it was the other." In terms of PMR and spondlyloarthritis it was sometimes both.

In terms of not being able to taper off Prednisone. It was either a flare of something or adrenal insufficiency but probably "a combination of many things."

As for being on Prednisone daily for more than 12 years --- "it was one thing after another" in terms of the side effects.

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Colitis might be an extra-articular manifestation of spondyloarthritis. I wonder if it is possible to have both RA and spondyloarthritis?

"Arthritis can be a symptom of many types of diseases, but thorough differential diagnostics allows for an unambiguous diagnosis in most cases. However, it should be kept in mind that one diagnosis does not necessarily exclude another."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4847317/
For the longest time, I confess to being guilty of thinking that "it could only be one thing."

I couldn't accept that all things are "likely multifactorial" as my primary care doctor said hundreds of times.

Actually Kevzara has few side effects and the ones which exist only affect a few people. They have to list anything anybody has had as far as side effects. Far less than methotrexate or prednisone. I know some people have a reaction at the injection site. I’ve been on it since December. It has been a game changer for me. My doc watches my liver function which was slightly elevated for two months, and I’ve been warned about watching out for infections but other than that..no problems and I am finally back down to 7mg of pred. My rheumatologists had about 10 patients with pmr and on Kevzara and none have had any problems.