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If you have tapering problems below 5 mg this might explain why.
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 10:38am | Replies (110)Comment receiving replies
I do think that Actemra and Kevzara are dangerous. I mentioned recently on this forum that on my patient chart at my rheumatologist, under problems it lists "use of a high risk drug Actemra". You have to assess the risk of Actemra or Kevzara against the benefit to your quality of life of getting off of prednisone. Since I will need to be on a medication for several years to treat my GCA, it makes sense to take Actemra and not take prednisone. But if you're on a relatively low dose of prednisone and hope to be off of it at some point, it might make more sense to not take a biologic drug.
Replies to "I do think that Actemra and Kevzara are dangerous. I mentioned recently on this forum that..."
"But if you're on a relatively low dose of prednisone and hope to be off of it at some point, it might make more sense to not take a biologic drug."
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I just wanted to add that this was exactly what I was told when Actemra was offered to me. The comment was, " If I only needed 3 mg of Prednisone there wouldn't be much concern and Actemra wouldn't have been offered." The context was 12 years on prednisone and still taking 10 mg daily. Even then, I was asked to taper my Prednisone dose as low as I could get before starting Actemra. I could only taper to 7 mg before I went back to 10 mg.
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Yes ... it does worry me that my rheumatolgist has no plan to ever stop Actemra. I don't know where the exit ramp for Actemra is either. I have been on Actemra for more than six years. Except for a couple of "interruptions," I haven't been off Actemra.
I know that Actemra can be stopped abruptly because I was off it for 6 months when there was a supply chain problem during Covid. I was actually switched to a different biologic.
Humira was aimed at a flare of uveitis. It was a fiasco of sorts because I wound up on 60 mg of Prednisone again. PMR and everything else flared up all at once while I was on Humira and prednisone until Actemra was restarted. At the time, my rheumatologist said Actemra wasn't likely to add any additional benefit to 60 mg of Prednisone + Humira. There wasn't any Actemra available anyway.
When I tried to taper off Prednisone again I couldn't get past 15 mg. That was when supplies of Actemra improved. It was amazing how I could taper off Prednisone again in about a month after Actemra was restarted. That was in spite of being on more than 15 mg of prednisone for 6 months. My endocrinologist said I had resilient adrenal glands because my cortisol level was still "adequate."
I don't really have much in the way of side effects from Actemra. After I stopped Prednisone again, I was gradually weaned off other medications that were presumably treating prednisone side effects. Now my rheumatologist is adamant about keeping me on Actemra so I don't ever need Prednisone again.
I still have a prescription for 20 mg prednisone tablets. I'm supposed to take 2 tablets daily as needed for any flare of uveitis while traveling. That prescription is to appease my ophthalmologist who was adamant about me staying on Humira.