Spoke too soon: After I posted, I found some... - PMRGCAuk

PMRGCAuk

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Spoke too soon

Bummed24 profile image
6 Replies

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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PMRpro profile image
PMRproAmbassador

"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.

Bummed24 profile image
Bummed24 in reply to PMRpro

Maybe even at these higher doses of Pred, I could try the slow taper.

PMRpro profile image
PMRproAmbassador in reply to Bummed24

If the speed of taper affects you badly, you can start our slowed approaches at any dose to smooth things out a bit. Everyone is different.

Bummed24 profile image
Bummed24

Think I will try that. Thx!

Sharitone profile image
Sharitone

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

Bummed24 profile image
Bummed24

That's an idea too. Will keep that in mind if the DSNS five mg. drop doesn't work.

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