← Return to Better to be in some pain or better to up the dose of prednisone?

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@dadcue

The following link says the following:
"A patient may notice a decrease in symptoms as soon as 1 week or as long as 12 weeks after starting a biologic, and symptoms may continue to improve for months afterward."
https://www.arthritis-health.com/treatment/medications/biologics-basic-facts-patients#:~:text=Biologics%20Take%20Time%20to%20Work&text=For%20example%2C%20many%20people%20who,develops%20antibodies%20to%20the%20drug.
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The above link also says:
"A biologic drug targets and prevents a specific reaction from happening, stopping the inflammatory process in its tracks. In contrast to biologics, conventional drugs treat general inflammation (and resulting symptoms like joint pain) after it has begun."
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My experience with Actemra was the same. It was unclear to me how fast Actemra worked. I was on 10 mg of prednisone when Actemra was started. My rheumatologist said that I needed give Actemra 3 months to see if it would work for me.

I was used to tapering by 1 mg per month so that was how I tapered from 10 mg to 7 mg. It took 3 months to taper to 7 mg just because that was how I usually tapered. My pain didn't increase on 7 mg. My observation was that Actemra "seemed to work" but I didn't know if it was working or not. I didn't have a flare at 7 mg and didn't need to increase my prednisone dose was all I knew.

My assumption at the time was that I should be able to taper faster IF Actemra was working. I decided to test my assumption and tapered by 1 mg per week from 7 mg to 3 mg. Actually, I was getting impatient and I wanted to get the "inevitable flare" over with.

I was getting misinformation about fast tapers and that it was safe to take 5 mg of prednisone for the rest of my life. The "experts" on another forum said doctors in the USA were "breaking the rules" by treating PMR with Actemra. This was in 2019 so PMR being treated with Actemra was unconventional at that time.

When I got to 3 mg without a flare, I was nervous (more like anxiety) about tapering so quickly. I felt okay but I was conditioned to think that I shouldn't taper off prednisone so quickly.

I saw an endocrinologist about 2 years prior to this when I was still taking 15 mg of prednisone. She said there was nothing she could do if I still needed that much prednisone. I remembered the endocrinologist telling me if I ever got to 3 mg that I should come back to see her.

I told my GP that I was unsure about what to do. I mentioned to my GP what the endocrinologist told me and that prompted him to check an a.m. cortisol level. My cortisol level was low so I was told not to taper any lower than 3 mg.

It took at least 6 more months for my cortisol level to improve. My prednisone dose hovered around 3 mg for months because of adrenal insufficiency. As far as I could tell Actemra was working for PMR but I had some "discomfort" because of adrenal insufficiency.

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One additional thing ... the endocrinolgist monitored my cortisol level while I was on 3 mg of prednisone. She said I SHOULD NOT increase my prednisone dose unless it was absolutely needed. She also said I SHOULD increase my prednisone dose "if I felt the need' but "preferably" I should call her first before increasing my dose. She provided me with a direct number to call.

She implied that if the need was an adrenal crisis that I didn't have to call her first ... take prednisone immediately and call her later. We discussed the details about what an adrenal crisis might feel like.

When it was time to discontinue prednisone ... the endocrinologist told me 3 mg was a small dose of prednisone. She said I could simply stop prednisone without a taper. She said it "might be safe" to stop taking 3 mg of prednisone and go directly to zero as long as my cortisol level was "adequate." She just reiterated that I should take prednisone again if I felt the need.

The endocrinologist called my rheumatologist to verify that I didn't need prednisone for PMR. I just verified that Actemra seemed to work.