Trouble going below 3mg

"This is hard work for patients because for most of that time, you have to run on less glucocorticoid that you need in order to wake up the adrenals. This is the reason that some of you might choose to stay on 3mg daily even if your vasculitis is in remission."
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Thanks for this ... it is the first time I have read this in print from any reputable source, It figures it comes from endocrinologists. I get so tired of patients telling other patients to increase their dose all the time for questionable flares. It is no wonder patients have a hard time tapering off prednisone and prednisolone.

I think steroid sparing medications, both conventional and biologic, should be encouraged too . These medications might help a patient to get to less than 3 mg because they don't suppress adrenal function. We need all the help we can get!

I've done a similar tapering schedule since 7mg, at a reduction rate of .5mg every 3.5 - 4wks for a drop of 1mg every 7-8 weeks, same as that schedule. You've done well to get to 3mg. I'm currently doing a week on 3.5mg before starting the incremental taper to 3mg in a few days.

My new rheumatologist said to stick to the same schedule since it was working. Interesting you say you had a little trouble at 2mg. My next rheumatology appointment is September when I should be at 2mg. He said if I was going to have problems, it might be around then. Let's both hope for the best. So far, so good.

It seems that 3 mg or less is the magic dose to allow for adrenal recovery. My endocrinolgist wouldn't even discuss adrenal insufficiency with me until I could maintain a 3 mg dose of Prednisone AND until I didn't need Prednisone anymore to control PMR.

At the 3 mg dose, I was told not to even think about tapering any lower. I was ordered to stay on 3 mg until my adrenals recovered. I didn't always stay on 3 mg and I pushed the limit but I said that I stayed on 3 mg. Without the biologic, I wouldn't have been able to get anywhere near 3 mg.

In any case, my cortisol level did improve. I'm still amazed that my endocrinologist said 3 mg was such a small dose that I didn't need to taper after my cortisol level was adequate. The biologic I was taking controlled PMR so I wasn't too worried about a "flare." The thought of an adrenal crisis scared me more so I did a fast taper from 3 mg to zero.

It is good you are working with your doctor.

I had my markers tested on Monday. In April Sed rate was 5, CRP was 6.6. Monday Sed rate was 14, CRP was 14.5. At 2.5mg and 2mg I was feeling more than a "bit tired". I would call it fatigued. Fearing I could be flirting with adrenal insufficiency, I decided to go back to 3mg. I think I'm ok at 3mg. I'm going to finish this week with 3mg and start that taper next week.
My rheum was against splitting pills and this taper is whole pills, no splitting. My next appt isn't til Aug so I'll message him my plan.
That article talks about being at 3 mg forever as a choice.

Either way, the total weekly dosage is the same whether or not pills are split. For example, in Week1 the total dose of the schedule you will follow is 20mg, and I'll get the same weekly dose of 20mg with two days of .5mg reduction in Week1 instead of one day of 1mg reduction. It might be just psychological, but I feel more comfortable with the smaller reductions. The end result should be the same.

Incidentally, I also noticed a distinct drop in energy while reducing to 3.5mg. I wouldn't call it fatigue but I've become more sluggish, moving more slowly and lacking the previous morning enthusiasm for tackling the daily to-do list. I've pushed through it so far with a recovery day every few days, but expect that could worsen at the next reduction.

I am not being critical of anyone splitting pills. Whatever works for you. My Dr is not a fan of pill splitting, not sure why. I agree with you.

The other option my endocrinologist offered was for me to switch to hydrocortisone.

"The goal of glucocorticoid replacement in adrenally insufficient patients is to abolish symptoms of glucocorticoid deficiency and prevent adrenal crisis while avoiding over-replacement. The cornerstone of glucocorticoid replacement is oral hydrocortisone, typically 15–25 mg daily, taken in divided doses. Total daily hydrocortisone requirement is dependent on body surface area with normal cortisol production rate about 6 mg/m2/day.19 The first dose, generally 10 mg, should be taken immediately on wakening.20,21 A further one or two smaller doses should be taken at 4–6 hourly intervals, with the final dose taken more than 4 hours before bedtime."
https://pmc.ncbi.nlm.nih.gov/articles/PMC6297573/#:~:text=The%20goal%20of%20glucocorticoid%20replacement,daily%2C%20taken%20in%20divided%20doses.
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I have no experience with hydrocortisone. My endocrinologist said it was optional and I elected to stay on Prednisone.

I'm 2 weeks into 3 mg per day. In 2 weeks I'll drop to 2 mg, and then in 4 weeks to 1, and then hopefully in 4 more weeks to 0. This is my rheumatologist's plan.

This past weekend I did about 10 hours of hard physical labor over 2 days, and I have felt ok this week, just a little tired. I hope the fact I could do that much work and recover ok indicates my adrenals are functioning. I guess I'll find out with my next step down.

I am getting more than a little tired and achy so maybe I did not stay at 3mg long enough.
That article implied that some people would/could/should be at 3mg forever.
Does everybody taking a biologic or DMARD get to 0mg prednisone?
There is a hefty copay with my insurance for the biologics. I know people say it could be covered if ordered as an infusion. My formulary does not have infusion listed as an option, only injections of varying strength. I did not call insurance though, only did a search of covered meds.

I take weekly Actemra injections. They are covered by my Medicare advantage plan under Part D. The maximum copay for all my Part D drugs for the year is $2000, and I basically met that with 4 Actemra injections.