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Stopping prednisone...gradually and safely....
Good news...the medicare PDP approved Nubeqa in lieu of Xytiga and prednisone, I will start Nubeqa next Wednesday. The MO told me to keep taking Orgovyx and Zytiga w/pred until then but did not say to wean myself from the prednisone and I did not ask to be honest. When I got home I did some research and realized a gradual withdrawal from pred is required. I have been taking 5mg a day for 4 months with 4 250 tabs of Zytiga. So...I have about 20 5mg tabs left....should I take 5mg every other day...cut the 5s in half and take 2.5 everyday for a few days then 2.5 every other day....then cut 2.5 in half and so on....the permutations are many...use all 20 or just quit after 2 weeks (one week after starting Nubeqa)? Hmmm...take one less Zytiga tab while reducing pred at the same time? I will have to say that the rabbit hole of prostate cancer has been interesting, I can hardly wait till Pluvicto raises its radioactive head.... like a bad sci fi pic from our misspent youth...lol.
Opinions on the timeline? Dosage? I would be glad to hear from anyone on this, experienced or not. Ill make a decision one way or the other, I have a week to mull it over. Thank you everyone here on the forum, I hope you all have a good day and are doing as well as you can, given the circumstances. Thanks for reading this post, Ill be reading yours!
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I taped it down for a month and found that within a week I was getting so exhausted in the afternoon I had to sleep. Over at the ancan.org weekly online prostate cancer forum They discussed that one week. Turns out a number of people there had stopped too quickly and had major fatigue problems. It can take two or three months of taping to avoid the fatigue. Your body is waiting to start producing cortisol at normal levels, For some, it is slower than others.
My MO gave me a specific timetable which I then reviewed with the pharmacist for additional input. I don't recall how long the gradual reduction of prednisone lasted, but I didn't notice any additional side effects as a result of stopping after 24 months of taking it. It's important to do it as directed to avoid secondary adrenal insufficiency.
Bill
@jeffmarc
Thank you Jeff for the info...if I might ask.. I have been at 5mg for 4 months...how long were you on it and what was your dose? what was your ending dose? It took you a month to get over SE?
First week was the worse? Did you take a little more to feel better but not the original dose?
Might be best to take more of a reduced dose (oxymoron!) at the start then flatten the curve towards the end? Im going to make a little graph and think about this....thanks! Any thing I can eat or take to help my adrenals get back to "normal" ?
@stage4lovolmetpc
I was on 5 mg for 2 1/2 years. If you were only on four months, you don’t have to taper it as long. For me a month wasn’t long enough. I really needed two or three months. I started taking 2 1/2 mg for a few days and then took it every other day for a few days and every three days for a few days. It wasn’t slow enough because I’d been on it so long. I had one guy I was working withwho had to go down to 1 mg for a while before he could fully stop.
I was on it for 4 months. I was told to tamper off to 5 mg every other day for two weeks, then 2.5 every other day for two weeks. But even then I had side effects from getting off it, including mostly fatigue. No one even told me to expect any.