After I posted, I found some chatter from four years ago addressing my concerns. It seems like I just need to wait to taper until I have better control of my symptoms. Admittedly, I am feeling pressure from my provider to reduce five mg every week or so, since I have been on Actemra. Which I am not doing. 🤭Thanks to advice from all of you. Studies and real life situations can be quite different,
To his credit, he is concerned about the high doses of Pred, and possible side effects. Me too, but my cerebral blood supply is a higher priority, right?
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Bummed24
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"but my cerebral blood supply is a higher priority, right?"
I'd say so! I think the problem is that many of them simply don't understand how things work - and that there is a very good reason that pred is still used with Actemra being added in: pred works almost instantly, Actemra doesn't. It would also be unethical to do studies to see how successful Actemra is in avoiding vision loss on its own, too much risk.
I suppose if you really want to go very slowly, you could always drop by 1mg at a time, provided you have the 1mg tablets. Or you can split any uncoated pred tablets
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Too much too soon’
Too soon to celebrate?
Too soon to taper
Too soon for a taper?
Did I chicken out too soon
