reducing prednisolone once you get down to 5mg

My father got down to 5 mg, but then he had other health conditions and a possible flare, so we never found out what happens below 5 mg >_<

It doesn’t sound like a bad idea though, especially if the prednisone is causing or contributing to other problems. I feel we’ve heard others who had to switch from prednisone to something else. Hopefully we hear from others in the group.

Wishing you and your husband all the best.

@dam67, you may also be interested in this related discussion:
- Synacthen Test: https://connect.mayoclinic.org/discussion/synacthen/

Is this the test you're referring to?

I was on a moderately high dose of prednisone for 13 years for PMR. When I was able to taper down to 3 mg of prednisone -- only a morning 8 a.m. cortisol level was checked. My morning cortisol level was low so my rheumatologist told me to stay on 3 mg and an endocrinologist was consulted. I stayed on 3 mg of prednisone for 3 months waiting for my appointment with the endocrinologist.

I asked the endocrinologist about a synacthen test but she said it wouldn't be needed. In fact, the endocrinologist "expected" my cortisol level to be low given I was on prednisone for a very long time. The only question was whether or not my adrenals would respond to a lower dose of prednisone and start producing cortisol again. The endocrinologist said only time would tell whether or not my adrenal function would improve.

My endocrinologist wasn't overly optimistic. She said I might need a "maintenance dose" of prednisone for the rest of my life. She explained that cortisol was a life essential hormone. A side effect of prednisone was that it replaced the cortisol that my adrenals produce. The adrenals lose their function when prednisone is taken for a long time. We eventually become "steroid dependent."

According to my endocrinologist, another reason I might still need prednisone was if I still needed prednisone for PMR. I didn't think I needed prednisone any longer for PMR because a biologic called Actemra (tocilizumab) was keeping PMR symptoms in check.

It took a long time for my cortisol level to improve. I was able to stay on a low dose of prednisone while doing Actemra injections. This biologic didn't suppress my adrenal function like prednisone did. When my endocrinologist said my cortisol level was "adequate" only then was I able to discontinue prednisone.

The following link is a good overview about how to manage adrenal insufficiency.

As the link suggests:
"When uncertainty exists as to whether a patient has adrenal insufficiency, a synacthen (ACTH1-24 stimulation)17 test should be used. In this test, 250 μg of synthetic ACTH is given parenterally and serum cortisol is measured 30 and/or 60 minutes later."

My endocrinolgist was certain about my symptoms of adrenal insufficiency in the context of long term prednisone use. She said the synacthen test wasn't needed in my case.

"Cortisol ≤3 mcg/dL – A low early morning serum cortisol concentration (≤3 mcg/dL [80 nmol/L]) in the absence of CBG deficiency is consistent with adrenal insufficiency [13-15]. When multiple symptoms correlate with the low cortisol value, ACTH stimulation testing typically is not needed to confirm the diagnosis."

I should add that my being able to stay on 3 mg for an extended period of time was only possible because of Actemra. After my cortisol level improved, my endocrinologist said "it might be safe" to stop prednisone. She said it would be okay to go from 3 mg to zero without tapering. However, she allowed me to taper off if I wanted too. She said I could take prednisone again for any reason if I "felt the need."

I had the need to take prednisone again when I stopped prednisone the first time but that is another long story. I didn't have an adrenal crisis.

I was able to taper off prednisone a second time --- 60 mg to zero in a few months the second time. I have been off prednisone for more than two years. I still take Actemra as a monthly IV infusion.

Thank you for sharing this information. I think he will soon be at this stage. I will read the link you have attached.

Don't worry about adrenal insufficiency too much. If your husband still needs prednisolone for PMR there isn't much that can be done. Just be wary of anyone who encourages "long term" prednisone use.

My rheumatologist wanted me off prednisone as soon as possible. She also made sure I was aware of the consequences of long term prednisone use. She encouraged me to taper off and tried everything she could think of to help me to taper off. However, she also made sure I had enough prednisone to manage the pain.

There were intervening factors besides PMR. My rheumatologist said there was a "full range" of problems so it wasn't "just PMR." I don't think I'm the only person here with multiple problems. In a way, PMR only is relatively easy to treat as long as a person can get off prednisone relatively soon. Thirteen years for me was way too long!

The advice to taper slowly was given to me at the onset on PMR because of the potential for adrenal insufficiency and not necessarily for causing a PMR flare. Unfortunately, the longer a person takes prednisone every day the more likely and the more difficult the problem with adrenal insufficiency becomes.

Cortisol is called the stress hormone. Any stress might cause an "inflammatory flare" but it isn't always PMR just because we happen to be diagnosed with PMR. In my opinion, it is more likely that that our body's natural inflammatory response is not being regulated well. This is especially true when our prednisone dose gets into single digits,

I just wish I had been more aware of the magnitude of the problem that adrenal insufficiency causes. It wasn't until I was able to get to 10 mg after 10 years when I realized it was adrenal insufficiency. A person who had an adrenal crisis explained everything to me.

Prednisone is gentler than Predniselone in the first place. After 5mg, he will need to taper way down over a substantial period of time if he has been on it long.

@dam67 may i ask whatever happened to your husband ? did he get tested ?