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Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA

Polymyalgia Rheumatica (PMR) | Last Active: May 21 8:50pm | Replies (107)
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@bill8491

I have been on Actemra for 7 weeks. I started Actemra with an accompanying dose of Prednisone at 30 mg. Which tapers each week. I had no pain with the prednisone (but the side effects of prednisone were brutal) so I was looking forward to the tapering of prednisone. I am now at 10 mg of Prednisone and a weekly Actemra injection. Unfortunately, I’m feeling some of the PMR pains again. I’ve read where many have had great success with Actemra, but I’m thinking I’m not one of them. I’m going to tough it out a few more days and if things don’t get better, I’ll be back to my rheumatologist.

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Replies to "I have been on Actemra for 7 weeks. I started Actemra with an accompanying dose of..."
pickle7 | @pickle7 | Jul 19, 2022

Maybe you’re tapering too quickly. The multiple times that I had taken prednisone had extended tapering times much longer than what you’re describing. I tapered over at least an 8-10 month period.

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DadCue | @dadcue | Jul 19, 2022

I was taking prednisone daily for 13 years before Actemra was tried. It takes time for Actemra to start working. I would say at least 3 months for me to start to feel a difference.

I tapered by 1 mg per month for the first 3 months. After that, I could taper more quickly only down to 3 mg of prednisone. My rheumatologist didn't want me to taper any lower than 3 mg until I saw an endocrinologist because of adrenal insufficiency (low cortisol level). The adrenals need time to recover from being suppressed by prednisone. The symptoms of adrenal insufficiency are extreme fatigue and you can also have aches and pains similar to PMR symptoms. It took a few more months before my adrenals were producing enough cortisol. An endocrinologist gave me the green light to discontinue prednisone when my cortisol level was adequate.

I'm still doing Actemra injections every 10 days to treat PMR and some other autoimmune problems. I have been off prednisone for more that 2 years. I haven't been able to discontinue Actemra.

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