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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'm so sorry you've had to go through this too. That's funny about people asking how much you're on. LOL My husband's metabolism is on over-drive. He's jittery which has to be so annoying. I see his hands shaking and want to cry. It comes on about an hour after taking prednisone and lasts for hours, until his evening dose. The evening one isn't as bad. Then again he takes a lower dose in the evening. 40/30 mg now.
Wow!! A year even with Actemra? That's brutal! The one good thing is he has no pain. And that is worth a lot after having seen what he went through. I honestly thought he might not make it through this on his darkest days. It was a very wise ER doctor that got things moving in the right direction. Had we listened to his rhumatologist I have no idea what would have happened. Suffice it to say we've found a new one we're very happy with. We lucked out and got the chief of rhumatology (after she found out what we went through.) He has a really bad case of GCA that was very resistant to treatment. It took IV infusions and splitting his daily dose of prednisone to get him on track.
Are you still on Actemra? Our new rhumatologist commented last week that he could be on it for the rest of his life???
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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.