So my doc is putting me on Xtandi since Zytiga didn't work for me for very long which is a bummer. Since I was running out of it doc said keep taking it until it's gone and then switch to Xtandi. Well.... it still hasn't come yet and it's been a month. since my doc ordered it. I should be getting it by the end of the week. I'm calling them after breakfast. I am new in the system so I can see these errors happening.
Well when Zytiga ran out I just stopped taking prednisone too. I finally realized how that was a bad idea haha.
I was noticing my joints started to ache. I just thought, "Oh, I guess my body is reacting to the cold." Then I started to get some nausea and body aches. I looked it up this morning.... BINGO, I have to be having withdraws. I started back up on it today and I think I'm starting to get better. I should know in a few more hours.
What sucks though is doc back in Thailand told me to get on 10mg because he thought maybe it might taper off the rising PSA. My new doc said, "Nope, that doesn't help."
I guess one of the missions on Thursday when I see my doc is getting myself down to 5mg.
It's nice to know these types of things ahead of time though haha.
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FinalBossMatt
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Well just a follow up on this, I got REALLY FUCKED UP with being off of prednisone so I took it again since I had leftover pills while waiting for the Xtandi. I honestly thought I was going to have to run off to the hospital for pain management. Today is the second day of taking a prednisone again and I still feel like I've been beaten half to death .
Xtandi finally got here and I took it today, so that's a plus!
I have found that it takes me 6 weeks to 2 months to taper off 5mg of prednisone or 0.5mg of dexamethasone. It takes a while for my adrenals to kick in again and deliver the steroids you need. What I have noticed is that after what is for me a "normal" amount of exercise cycling or skiing I'm trashed for days afterwords. Stretching out the taper time eases the slow recovery for me. You can get 1mg pills and when the morsels get to small you can go to an every-other-day dose to extend your taper time.
Just an update, I've been feeling fine for the past few days, all back to normal. I've started on Xtandi too. Even though my cancer isn't aggressive, most medicine hasn't lasted more than a year. I'm also getting a dose of Lupron so hopefully it will last for a while.
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