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@dadcue

Thank-you for the information about the 2023 ARC meeting.

The 7 mg dose is a hard dose to get past for many people. Otherwise, I agree it is possible to taper as quickly as you have. I have other autoimmune disorders notably reactive arthritis and uveitis in addition to PMR. I would often taper from 60 mg to zero in a couple of months to treat uveitis and reactive arthritis.

PMR complicated things after it was diagnosed. I needed 40 mg of prednisone to start with and was still taking 30 mg after 5 years and 20 mg after 10 years. I had many medical complications likely caused by long term prednisone use.

Sometimes I was able to reduce my prednisone dose to under 10 mg after 12 years of PMR but never less than 7 mg. I flared every time when I was on 7 mg or at least my symptoms worsened dramatically.

Actemra changed everything for me. I went from 10 mg to 3 mg in four months. My rheumatologist thought I should stay on 3 mg until I could be evaluated by an endocrinologist for adrenal insufficiency. My cortisol level was low so I needed to stay on 3 mg for 6 months. Since cortisol plays a significant role in regulating inflammation, I think my low cortisol level was causing flares whenever my prednisone dose was too low. Actemra prevented the inflammation from recurring and allowed me to reduce my prednisone dose to 3 mg. However, I had to give my adrenals time to recover while I stayed on a low dose of prednisone.

It was my endocrinologist who gave me clearance to discontinue prednisone when my cortisol level was "adequate." I was off prednisone for a few days while still doing Actemra injections when I had a flare of panuveitis.
https://rarediseases.info.nih.gov/diseases/8577/panuveitis
I needed 60 mg of prednisone again.

Actemra was stopped and Humira was used to treat uveitis. I was able to taper quickly down to 15 mg of prednisone again except my PMR symptoms returned so Humira was stopped and Actemra was restarted.

The frequency of my Actemra injections was increased but now I do a monthly infusion. A monthly infusion works the best for me. None of my autoimmune conditions have flared up doing an infusion of Actemra monthly.

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Replies to "Thank-you for the information about the 2023 ARC meeting. The 7 mg dose is a hard..."

That's such a very long time to be on prednisone, dadcue, and I worry that I may find myself in the same boat. I'm glad you found a solution with Actemra! I'll make a note of this medication to ask my doctor about, although much depends on whether or not it's available in Canada, and how much it costs.