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Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper . Hope your eyesight is preserved? My GCA is with no temporal / cranial involvement. Medical emergency non the less with aortic involvement and other major vessels.
I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan .
I’m back to pre diagnosis health, travelling overseas at the moment. Keeping Actemera refrigerated as i travel is a small concern, but doable.
Replies to "Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper ...."
"I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan ."
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For GCA, people doing the slower prednisone tapers aren't on Actemra (tocilizumab). There are several advantages to being on Actemra. 1) people are able to taper off prednisone faster, 2) the cumulative dose of Prednisone is less, 3) a sustained remission lasts longer.
With the availability now of an approved steroid-sparing agent for GCA, it’s reasonable to ask whether a more rapid glucocorticoid taper would be feasible. This question needs more research but according to the following link --- maybe a taper as fast as 8 weeks is feasible.
https://www.steritas.com/insights/rapid-tapering-reduces-steroid-toxicity-in-gca
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Maye, my vision is ok. I got treatment for the GCA just in time to save it. I was hospitalized for 3 days and treated each of those days with an infusion of high dose methylprednisolone. I think my GCA is only cranial. I'm feeling much closer to pre diagnosis health as I keep tapering.
For what it's worth, my understanding is that Actemra can go unrefrigerated for up to 2 weeks.