Hydrocortisone

Interesting idea, spanishlady. I have not seen this recommendation anywhere. A disadvantage of this approach is that the twice a day corticosteroid dosing would hamper recovery of the adrenal glands as opposed to once a day dosing. Theoretically, one might gradually reduce the afternoon dose, and then the morning dose, to compensate for that. Not sure that this would work any better than the published protocols for tapering prednisone below the 5 mg level, but it is an interesting idea.

An endocrinologist might "recommend" switching to hydrocortisone if they are concerned about prednisone induced adrenal insufficiency. There isn't a lot of evidence that doing so makes tapering off prednisone any easier.

The following link discusses this issue:
https://pmc.ncbi.nlm.nih.gov/articles/PMC12766809/
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I don't think there is any consensus of opinion for the best way to taper off Prednisone other than it presents significant challenges especially during the last stages. My rheumatologist told said it wasn't rocket science and made it sound simple. The endocrinologist that was consulted when my cortisol level was too low said it was more complicated. I was told that I would not be able to taper off prednisone unless my cortisol level improved

The endocrinologist said I could switch to hydrocortisone if I wanted to but I didn't have to. It took a long time but my adrenals eventually recovered and I tapered off prednisone. The endocrinologist offered some interesting suggestions which ultimately worked. However. the endocrinologist also said I got lucky when my cortisol improved.

Thanks for your reply may I ask what the interesting suggestions were ?
I feel I am in a rock and a hard place …. Is it better to stick with the devil you know .

@mark2471
That’s exactly the Endos plan I am only on 2.5mg but it’s been 4 years , he wants to introduce the HC twice a day then drop the Prednisolone 1mg a month and reduce the HC over the following 7 months .
My early morning cortisol is 388

Sounds like a good plan! Good luck!

According to Google...
Yes, hydrocortisone pills can help with prednisone tapering, and switching to hydrocortisone near the end of a taper is a recognized clinical strategy. This transition is often used because hydrocortisone has a shorter half-life and more closely resembles the cortisol your body naturally produces, which can help your Hypothalamic-Pituitary-Adrenal (HPA) axis recover faster.
Why switch to hydrocortisone?Mimics natural cortisol: Hydrocortisone is structurally identical to the cortisol your adrenal glands make.
Shorter duration: Unlike prednisone, which has a longer effect on the body, hydrocortisone clears your system quickly. This allows doctors to test your morning cortisol levels more accurately to track your adrenal recovery.
Faster recovery: Some clinical trials have shown that patients who switch to hydrocortisone toward the end of their taper reach complete HPA axis recovery weeks faster than those who taper on prednisone alone.
How the dosing Works
Because these medications have different potencies, your doctor will calculate an equivalent dose. The standard conversion is: Prednisone 5 mg (or Prednisolone 5 mg) is equivalent to Hydrocortisone 20 mg.

@spainishlady

Just for context ... I was doing Actemra (tocilizumab) injections every two weeks when I successfully discontinued prednisone. I started Actemra injections on January 1st, 2019. I tapered off Prednisone in early 2020. Everything I thought I knew came from another patient forum but not Mayo Connect. The endocrinologist suggested that I shouldn't listen to what was being said on the other patient forum. She said it was unsafe to stay on prednisone for the rest of my life unless my adrenals were "permanently suppressed."

No "slow taper" was going to allow me to taper off prednisone if my cortisol level stayed low. Tapering off Prednisone needs to be "individualized" and context is important. For more context, I was on prednisone for 12+ years and mostly at a dose greater than 20 mg after starting at 35 mg when PMR was diagnosed at the age of 52. My 12+ years on Prednisone were characterized by countless "PMR relapses" mostly when I reached 7 mg of Prednisone but I was more comfortable on 10 mg. My rheumatologist said I was "too young" (64) to stay on Prednisone for the rest of my life. He also said I was "too healthy" but I disputed that after being on Prednisone for 12+ years.

Flaring repeatedly at 7 mg suggested I needed prednisone for adrenal suppression more than PMR. The pain and overwhelming fatigue caused by a low cortisol level mimics PMR and is worse than PMR but it is almost impossible to separate the two types of pain. The endocrinologist knew more about the symptoms of adrenal insufficiency than my rheumatologist and I did.

It was a long process for me to discontinue prednisone. The endocrinologist suggested many things to me. The best suggestion was when I was told to stay on 3 mg. That dose was low enough to allow my endocrinologist to get a good read on my a.m. cortisol level. It was also a low enough dose for adrenal recovery to begin.

When my cortisol level was low, the endocrinologist said there was no point in reducing prednisone any lower until my cortisol level improved. She said 3 mg was a low enough dose to allow my adrenals to begin to recover. I needed to resist the urge to increase my dose. She said a low dose of prednisone was essential for adrenal recovery and I was going to be "uncomfortable" for a while.

Six months later after I stayed on 3 mg, my a.m cortisol level was "adequate." That was when I was told it "might be safe" to discontinue prednisone. No taper was needed as long as PMR was under control AND my cortisol level remained adequate. I want to emphasize that BOTH conditions needed to be met.

I have learned that Actemra isn't a devil compared to prednisone. Actemra has prevented PMR relapses for 6 years and doesn't suppress my adrenal function like prednisone did. My adrenals made a "full recovery" during the first year or two after I tapered off Prednisone. I'm currently doing a monthly IV infusion of Actemra for multiple autoimmune conditions and not only for PMR.

If it helps you ... my endocrinologist said that ANY cortisol level after 12 years on Prednisone was an encouraging sign. I would have to look it up but my cortisol level was under 300. Don't lose hope of discontinuing Prednisone.

@dadcue very helpful information - the complexity of this illness! Did you receive any advice during these long latter stages about adrenal insufficiency / crisis. E.g at 3 mg and still at the stage of natural cortisol being low how does the body respond in stressful situations? In a body with good natural cortisol levels and unaffected by Prednisone, the adrenals are able to rapidly respond to supply additional cortisol in response to any stress.

@gmdb

Actually ... the endocrinolgist and I discussed the problem with arenal insufficiency in great detail. There were some "contingency plans" in place when it was decided that I would discontinue prednisone. The endocrinologist tried to reassure me that an adrenal crisis was "relatively rare" in cases of prednisone induced adrenal insufficiency. On the other hand, she could not and would not attempt to predict would happen when I discontinued prednisone. Although my cortisol level was adequate on the day it was checked it was unknown whether or not my cortisol level would be adequate in the future. However, the best way for my adrenals to recover was to be off prednisone entirely.

The contingency plans weren't very elaborate and were very vague. The endocrinologist made me aware of what "could happen" vs. what "would happen." My endocrinolgist wanted to be informed if "anything happened" and provided me with a direct telephone number to call if something happened. My directions were to call before restarting prednisone again but I wasn't required to call first. I was also told to restart prednisone again "for any reason if I felt the need" and call later.

In retrospect it was kind of funny. I discontinued prednisone and it was nothing more than a "leap of faith." I was off prednisone for about 2 weeks when something happened. It wasn't an adrenal crisis or even a PMR flare. It was an emergency and I needed 60 mg of prednisone again and Actemra was temporarily discontinued.

What happened was unpredictable in the sense that prednisone was preventing another autoimmune condition from flaring in addition to PMR. Actemra was never intended to control the other autoimmune condition and it was decided that Actemra "wouldn't work." That assumption was also wrong because 3 months later I was back on Actemra. I was still on 20 mg of prednisone but I went back to zero again in less than 4 weeks after Actemra was restarted.

Actemra has worked well for me ever since. If I had listened to the well intentioned people on another forum who claimed to know everything, I would still be on prednisone. The other forum advocated and promoted prednisone for the rest of my life.

Actemra has controlled all of my autoimmune conditions and I haven't had any relapses of anything in more than 5 years. Adrenal insufficiency isn't a problem anymore. I had some other prednisone related problems that persisted for 5 years after I tapered off prednisone. A monthly Actemra infusion works better for me instead of the weekly injections. Actemra works infinitely better for me compared to prednisone.

I suspect Kevzara will work for many people too but not everyone. Many people but not everyone on this forum report good results from Kevzara. I'm just glad we now have other options other than prednisone.

@dadcue Thanks - that is all very insightful. You had a lot of experience with a very successful outcome. Sounds like you had a very good doctor in your endocrinologist.

I think one of the issues for those of us who are outside the US, is that we have limited access to the biologics and no access if we are diagnosed with PMR only. In Australia, we often have to get our diagnosis "changed" to access Actemra and Kevzara is even more limited. Some of it is about cost to our national health system as a lot of the medicines are substantially subsidised by the government, but more so it seems to be an exceedingly cautious bureaucratic system that insists on local testing to establish safety and efficacy for each potential condition, even if other countries' bureaucracies (E.g. FDA) have done this extensively.