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Living with someone on high-dose long-term prednisone
Polymyalgia Rheumatica (PMR) | Last Active: May 10 10:01am | Replies (23)Comment receiving replies
I was on moderately high doses of prednisone for 12 years ... in the 20-40 mg range most of the time.
Actemra would have worked sooner had it not been for adrenal insufficiency which caused a low cortisol level. Actemra allowed me to taper from 10 mg to 3 mg in a couple of months. I had to stay on 3 mg for 6 months until my cortisol level improved.
When I tapered off prednisone the first time, I was doing Actemra injections. I had a relapse and needed to go back on 60 mg of prednisone again. The relapse was unexpected . The relapse wasn't GCA but another eye condition that potentially can cause vision loss.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
Actemra was stopped by my ophthalmologist and another biologic was tried for a couple of months. I wasn't able to taper off prednisone while on the other biologic and got stuck on 15 mg of prednisone again. My rheumatologist asked me if I wanted to try Actemra again. I couldn't wait to try Actemra again and it took 2 months to go from 15 mg to zero the second time. I wasn't on prednisone very long the second time so my adrenal function wasn't as suppressed.
Long term prednisone wasn't good for me. I'm much better on Actemra. I still do a monthly infusion of Actemra. A monthly infusion seems to work better for me compared with the Actemra injections. I haven't had any relapses in more than 2 years. My rheumatologist isn't inclined to stop my monthly Actemra infusions anytime soon.
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@dadcue
Thank you for sharing your experiences with prednisone and Actemra. It was very helpful. I am going to talk to my husband's rheumatologist to ask if she thinks the monthly infusions would be better than the shots in helping him to taper more quickly from the high doses of prednisone. He's still on 70, was on 80 since the last week of February.
Wow! You were on 20-40 for 12 years? That is a very long time. I'm really glad you were able to get on Actemra and that it helped as much as it did. His new rheumatologist (who we trust) said he could stay on Actemra all his life and it wouldn't hurt him but that it's a very different story with prednisone. So my goal is to get him tapered off these high doses as soon as safely possible.