How did you cope with the side effects tapering off prednisone?

I also take Kevzara, which has been dramatically more powerful than the Prednisone.

There are certainly challenges to the 10% recommendation once you get below 10 mg. If it were a semi strict rule then the taper would look like this:

10 mg to 9 mg (9 mg) for 1 month
9 mg to 8.1 mg (8 mg) for 1 month
8 mg to 7.2 mg (7 mg) for 1 month
7 mg to 6.3 mg (6.5 mg) for 1 month
6.5 mg to 5.9 mg (6 mg) for 1 month
6.0 mg to 5.4 mg (5.5 mg) for 1 month
5.5 mg to 5 mg (5 mg) for 1 month
5 mg to 4.5 mg (4.5 mg) for 1 month
4.5 mg to 4.1 mg' (4 mg) for 1 month
4 mg to 3.6 mg (3.5 mg) for 1 month
3.5 mg to 3.15 mg (3 mg) for 1 month
3 mg to 2.7 mg (2.5 mg) for 1 month

The above tapering plan would take 1 year. After a year, the taper is by .25 mg increments and takes another year. It would be interesting to see how many people flare before the end of the first year. My rheumatologist wouldn't have cared if I took 3 mg or less for the rest of my life.
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In contrast to the above taper, while I was on Actemra, my taper was the following:
10 mg to 9 mg for 1 month
9 mg to 8 mg for 1 month
8 mg to 7 mg for 1 month
7 mg to 6 mg for 1 week
6 mg to 5 mg for 1 week
5 mg to 4 mg for 1 week
4 mg to 3 mg for 1 week

At this stage my cortisol level was too low. I was instructed to stay on 3 mg until my cortisol level improved. It took 6 months for my cortisol level to be called "adequate." I was reluctant to discontinue Prednisone but an endocrinologist said going from 3 mg to zero was okay. This was contingent on my cortisol level being adequate and I wasn't symptomatic. I was told that I could restart 3 mg of Prednisone "for any reason if I felt the need. " I needed to keep my endocrinologist informed if I felt the need to restart Prednisone.

The taper while on Actemra took approximately 1 year. I have stayed off Prednisone but now I take Actemra instead. I would say Actemra resulted in a significant improvement in my overall health and well being. My out of pocket financial cost is currently nothing because I get a monthly infusion.

I have been off Prednisone for more than 3 years. Now I have to figure out how to get off Actemra. My rheumatologist has no plan for stopping Actemra other than deceasing my infusion dose. At least I don't worry about what dose of Actemra I need to have. That is for my rheumatologist to decide based on my symptoms and my side effects.

Thanks for this information. I have an appt this Tuesday with my rheumatologist to discuss adding a different medication for my treatment. I started on 60 mg of pred in late July 2024 for GCA and PMR. Currently down to 8 mg. of prednisone. Have been at this level for a month. I was a little achy at first, but the last week and a half, I have a full on flare up. I think GCA has reared it's ugly head again, too. I want her to consider Actemra for me. Based on posts in this group, I think I am a candidate. Don't know if I have to try something like methotrexate, before Medicare will approve Actemra. I'm also thinking that if I go the infusion route, I won't have to deal with with my prescription drug plan and the costs associated with the self injection route.

"I want her to consider Actemra for me. Based on posts in this group, I think I am a candidate. Don't know if I have to try something like methotrexate, before Medicare will approve Actemra."
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I don't know why you wouldn't be a candidate for Actemra since it is FDA approved for GCA. I don't think Actemra is the "first resort" but likely to be tried after a relapse during the process of tapering off prednisone.

I started Actemra back on January 1st, 2019. Actemra was FDA approved for GCA in 2017. Actemra was offered to me for a couple of reasons. The reasons my rheumatolgist outlined on the authorization request were:

1) I was unable to taper off prednisone without recurring flares. I used Prednisone for 12 years.

2) My case of PMR was refractory because of #1 and because nothing else worked ... most notably methotrexate.

3) All other alternatives had also failed. Those alternatives included Leflunomide, NSAIDs, muscle relaxers and several medications for nerve pain.

4) My rheumatologist said Actemra represented my best hope of ever getting off Prednisone. I had side effects from long term prednisone use. Those side effects were mentioned as a way of saying my existing treatment with prednisone was detrimental to my health.

Kevzara was FDA approved for PMR in 2023 so it was NOT an option in 2019. Actemra was approved for GCA in 2017. My rheumatologist believed that Actemra "should work" for PMR but didn't provide any guarantees that Actemra would work.

An approval committee at the local level reviewed everything. The recommendation was that I should be treated "As If I Had GCA." I didn't actually have the diagnosis of GCA but the determination was "Probable GCA."