How are you tapering prednisone?

@gigilea thanks. My doc is the one who told me to taper by 1mg, go back up if needed. My pmr pain is bilateral also. Maybe ill try .5 taper next. Thank you!

@gigilea

The percent reductions make sense and I appreciate your effort. I don't disagree but would like to share what an endocrinologist told me. She told me it was safe to discontinue prednisone as long as two conditions are met. I had a low cortisol level so that was why I was seeing an endocrinologist. I was instructed to stay on 3 mg indefinitely because 3 mg was "low enough" for my adrenals to get the message to resume cortisol production again. That made sense to me because 3 mg is under the "physiological dose" of prednisone. The physiological dose is estimated to be 5 mg.

According to artificial intelligence:

"The generally accepted physiological range is 4 to 6 mg daily. This amount is estimated to mimic the normal, daily endogenous cortisol output of a healthy adult adrenal gland. Because of this, 3 mg sits just under the median physiological replacement threshold and is often used as a final, low-dose step when tapering off long-term steroid therapy to encourage the body's natural adrenal function to recover."
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The endocrinologist didn't say how long I needed to stay on 3 mg other than to say "as long as it takes" for my cortisol level to improve. For me, my adrenals started to produce "adequate amounts of cortisol" after 6 months based on a morning cortisol level.

Condition #1 was having my cortisol level return to normal.

Condition #2 dealt with why I was taking Prednisone in the first place. That was because of PMR along with some other reasons but overall I thought PMR was well controlled and I didn't need prednisone. I was taking Actemra at the time and I felt well. I didn't really know if I still needed prednisone although I didn't seem to have any symptoms of PMR.

The endocrinologist actually called my rheumatologist to make sure it was okay to stop prednisone. My rheumatologist gave his okay so the next part was interesting to me.

I was thinking about tapering by 1 mg per month from 3 mg to zero. The endocrinolgist said it wasn't necessary because 3 mg was such a low dose there was no need to taper. I could simply discontinue Prednisone by going from 3 mg to zero. A slower taper was only to provide time for my adrenals to recover. That happened but it took 6 months on 3 mg for that to happen.

Actemra was controlling my PMR ymptoms so condition #2 was met.

Both condition #1 and condition #2 were met but a doctor needs to determine this.

There was some concern about causing a flare but when I was ready to trust Actemra, I stopped Prednisone. I didn't go from 3 mg to zero in one step but I did stop Prednisone in a couple of days instead of 3 months.

@vjm0223 I have 3 different doses in my medicine cabinet- 20 mg. ( for flares), 5 mg. and 1 mg. tablets. If scored, also, you can break in half….

@gilbert56 thanks. Since I asked that in December, I’m now down to 1mg. Haven’t had any flares. I haven’t had to cut any of my pills.

@dadcue Boy I have gotten a lot of great info from from you. Thanks!!!! So if you did not take 3 months to go from 3MG to zero. How DID you taper the last bit?? For reference, I have only been on pred for 2.5 months for PMR. Tapered from 30MG to 1.25MG and voila, pain. Went back up to 5MG and now couple of days 2.5MG. Thankfully (guessing here) my adrenal glands have not been dormant very long and should be OK. PMR clearly still there. No health insurance here but getting a full 250,000 mile check up next week;-) Please tell us more details of the last 3 to zero tapering?

@pmrnew

First to say that I didn't do any of what follows without consulting with my doctors.

I did what I called a "countdown taper" by doing the following doses for one day each --- 3mg - 3mg - 2mg - 2 mg - 1 mg - 1 mg and then zero for a day --- After this, I would go back to 3 mg and repeat the pattern when I felt like it. It was an arbitary schedule that I did at one week intervals so nothing was scientific. I actually did these countdown tapers a few times before the endocrinolgist said I could discontinue prednisone. I was supposed to stay on 3 mg and not taper any lower than 3 mg because my morning cortisol level was too low.

I only did these countdown tapers when I was on Actemra. It was my attempt to see if Actemra was actually controlling PMR --- (condition #1 was met).

I discussed doing these countdown tapers with the endocrinolgist and she was interested in any symptoms that I experienced. Since I felt just as good on zero as I did on 3 mg, the endocrinologist said, "It might be safe to discontinue prednisone." That was only when my morning cortisol level was called "adequate" by the endocrinologist --- (condition #2 was met).

My endocrinologist and I had a long discussion about what "could happen" when I discontinued prednisone. We had some contingency plans in place for when I decided to stop taking prednisone altogether. The contingency plan was mostly that "I could restart prednisone for any reason if I felt the need."
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My first attempt at stopping prednisone only lasted for a week or two. I needed 60 mg of prednisone again but it wasn't because of PMR and I didn't have an adrenal crisis. It was something that was completely unexpected. I had a flare of panuveitis but for me, that was familiar territory. I just didn't ever have a flare of uveitis when I was taking prednisone every day for PMR.

Panuveitis is a severe, widespread inflammation affecting the entire middle layer of the eye (the uvea), as well as adjacent structures like the retina and optic nerve. It is a medical emergency that requires prompt evaluation by an ophthalmologist to prevent irreversible vision loss.
https://my.clevelandclinic.org/health/diseases/panuveitis
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What happened next was part of my saga of discontinuing prednisone. This part was more complicated but I was able to discontinue prednisone again 6 months later. The second time I discontinued prednisone, the remission lasted longer until there was a supply chain problem during Covid. That was when my Actemra supply disappeared and none was available.

@dadcue
Did you ever discuss hydrocortisone with your doctors when you were under 10mg prednisone? I need to get off prednisone because of an SMM diagnosis last month and I saw something about using hydrocortisone pills instead of prednisone while waiting for the adrenals to wake up.

@kjoed53

Hydrocortisone was discussed but only briefly. I was given the option of switching from prednisone to hydrocortisone when I reached 3 mg of prednisone. The endocrinologist I spoke with didn't think hydrocortisone would be any better than prednisone for helping my adrenals to recover. I don't think endocrinologists in general have come to any universal agreement about switching to hydrocortisone in cases of adrenal insufficiency.

The primary way of allowing my adrenals to produce cortisol again was staying at 3 mg --- below the physiological dose which is roughly 5 mg. The goal being to eventually stop taking all forms of synthetic corticosteroids and let my adrenals produce cortisol.

@dadcue
In my situation, I'm better off on hydrocortisone than prednisone based on all the information I can find. I'm waiting for a response from my hematologist/oncologist but I was wondering if you had any reaction from your doctors.