Hubby’s Exhausted

Posted by anything4him @anything4him, Mar 19 10:40am

Hi everyone,
Wife here! Some of you may remember me from before asking questions. Hubby has had the trifecta thrown at him since his original diagnosis. Radical Prostatectomy, rounds of EBRT, and has been on Abiraterone, Orgovyx and Prednisone for six months now. The docs just added Myrbetriq, and Effexor-XR.
He has incredible fatigue. We go for daily walks and do some light weights etc. He eats healthy. Bloodwork is good. But wow - the level of exhaustion that is not helped by sleep. How are you managing that? I’m sure the level of fatigue hits different between everyone but if you are super exhausted I’d love to hear any suggestions that have worked for you.
Much appreciated!

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Profile picture for xahnegrey40 @xahnegrey40

@ecurb wonder what the final negotiated price is after all the fluff and puff...I imagine it costs Bayer maybe $100 bottle max ( 120 pills) ..price is a moving target ...cost with insurance/without..subsidized..etc

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@xahnegrey40 You're right, it probably costs Bayer well under $100 to make a bottle of Nubeqa.

However, it will have cost far over $1 billion to take Nubeqa through various phases of clinical trials and then regulatory approval in the U.S., EU, UK, Canada, etc. etc. Each bottle of Nubeqa sold has to repay a fraction of those sunk costs, plus a fraction of the cost of the failed drugs that didn't make it through the trials to market, plus a profit for shareholders (Bayer didn't manage a profit in 2025 because of legacy legal and litigation costs, but are optimistic for 2026).

OTOH, it's fair to ask *why* we're relying on Bayer to do this. Since governments around the world are by far the biggest purchasers of drugs like Nubeqa, and the initial discoveries were probably funded by government research grants, OECD countries could get together, fund the trials and regulatory approvals themselves, and cut out the middleman (like they did for the Ebola vaccine a decade ago).

Would it work? Hard to say. But the current system produces meds that are absurdly expensive, even if Bayer's lack of profits in 2025 doesn't reflect that.

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Profile picture for jeff Marchi @jeffmarc

@ecurb
Not a low deductible it’s how Medicare pays for prescription drugs.

Last year the maximum you had to pay If you were on Medicare was $2000 this year it’s $2100.

In January when I placed my first prescription for Darolutamide, they charged me $2098.50.

That left $1.50 to pay for my Orgovyx prescription. Since then, I have not paid a penny for any prescription drug.

It doesn’t have anything to do with your insurance company. It’s what you pay when you are on Medicare.

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@jeffmarc thanks, I m not up to date on Medicare D, but I am now. VA has been paying my pill bills.

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Profile picture for northoftheborder @northoftheborder

@xahnegrey40 You're right, it probably costs Bayer well under $100 to make a bottle of Nubeqa.

However, it will have cost far over $1 billion to take Nubeqa through various phases of clinical trials and then regulatory approval in the U.S., EU, UK, Canada, etc. etc. Each bottle of Nubeqa sold has to repay a fraction of those sunk costs, plus a fraction of the cost of the failed drugs that didn't make it through the trials to market, plus a profit for shareholders (Bayer didn't manage a profit in 2025 because of legacy legal and litigation costs, but are optimistic for 2026).

OTOH, it's fair to ask *why* we're relying on Bayer to do this. Since governments around the world are by far the biggest purchasers of drugs like Nubeqa, and the initial discoveries were probably funded by government research grants, OECD countries could get together, fund the trials and regulatory approvals themselves, and cut out the middleman (like they did for the Ebola vaccine a decade ago).

Would it work? Hard to say. But the current system produces meds that are absurdly expensive, even if Bayer's lack of profits in 2025 doesn't reflect that.

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@northoftheborder well I understand the R and D costs...etc.. but then the doseage is 4 /day ( usually) so that factors into more cost...120 pills last about 30 days..now if you made them slightly more concentrated and took just 2/day the cost per pill is virtually the same so 120 bottle would last 60 days, right? so instead of buying 12 bottles/yr, you would just need 6 and 1/2 cost...maybe my logic is a bit fuzzy..I will blame it on ADT, but I also believe the consumers get head faked alot with medications...but we gotta have them and the drug makers know it..so pay up pal..oh..gotta stop, time for my eve Nubeqa doses...take them with some food..next week is PSA draw..

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Profile picture for xahnegrey40 @xahnegrey40

@northoftheborder well I understand the R and D costs...etc.. but then the doseage is 4 /day ( usually) so that factors into more cost...120 pills last about 30 days..now if you made them slightly more concentrated and took just 2/day the cost per pill is virtually the same so 120 bottle would last 60 days, right? so instead of buying 12 bottles/yr, you would just need 6 and 1/2 cost...maybe my logic is a bit fuzzy..I will blame it on ADT, but I also believe the consumers get head faked alot with medications...but we gotta have them and the drug makers know it..so pay up pal..oh..gotta stop, time for my eve Nubeqa doses...take them with some food..next week is PSA draw..

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@xahnegrey40 J&J does now make a single-tablet "horse pill" (so to speak) for their -lutamide, Erleada, but the 4-tablet/day format is still the recommended option for most patients.

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Profile picture for xahnegrey40 @xahnegrey40

@northoftheborder well I understand the R and D costs...etc.. but then the doseage is 4 /day ( usually) so that factors into more cost...120 pills last about 30 days..now if you made them slightly more concentrated and took just 2/day the cost per pill is virtually the same so 120 bottle would last 60 days, right? so instead of buying 12 bottles/yr, you would just need 6 and 1/2 cost...maybe my logic is a bit fuzzy..I will blame it on ADT, but I also believe the consumers get head faked alot with medications...but we gotta have them and the drug makers know it..so pay up pal..oh..gotta stop, time for my eve Nubeqa doses...take them with some food..next week is PSA draw..

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@xahnegrey40
Some people need to get the drugs in a lower dose, so that’s why they do 300mg. I know a guy was taking them two a day and then one a day because of reactions.

A lot of places won’t let you have more than 30 days worth of this drug at a time because of the cost and if you happen to stop taking it.

Even if they made the pills, double strength they would still have to charge the same amount in order to recoup their costs to develop the drug.

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Profile picture for northoftheborder @northoftheborder

@xahnegrey40 J&J does now make a single-tablet "horse pill" (so to speak) for their -lutamide, Erleada, but the 4-tablet/day format is still the recommended option for most patients.

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@northoftheborder I had a hard time with the orgovyx/Erleada combo..dont want any part of that ..

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I can't speak to the other drugs, but I can speak to prednisone. I was literally on a 6-day course (Day #1 six-pill dose decreasing to Day #6 one-pill dose) of it two weeks ago for a foot problem. I have had it several times before for other inflammatory and bone issues. I noticed that each time, it just kind of wrung me out a bit. I would doze in front of evening TV...something rare for me. During the day, I lacked my usual punch and energy. The day or so after my last dose of one pill, everything returned to normal. Has your husband really been on prednisone that long? I am guessing that it must be a consistent, one-pill-per-day dosing at the same lower strength???

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Profile picture for rlpostrp @rlpostrp

I can't speak to the other drugs, but I can speak to prednisone. I was literally on a 6-day course (Day #1 six-pill dose decreasing to Day #6 one-pill dose) of it two weeks ago for a foot problem. I have had it several times before for other inflammatory and bone issues. I noticed that each time, it just kind of wrung me out a bit. I would doze in front of evening TV...something rare for me. During the day, I lacked my usual punch and energy. The day or so after my last dose of one pill, everything returned to normal. Has your husband really been on prednisone that long? I am guessing that it must be a consistent, one-pill-per-day dosing at the same lower strength???

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@rlpostrp
How many milligrams was the prednisone dose you had to take?

Most people take the 5 mg pill With Zytiga, It’s a pretty low dose.

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Profile picture for xahnegrey40 @xahnegrey40

@northoftheborder I had a hard time with the orgovyx/Erleada combo..dont want any part of that ..

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@xahnegrey40
Orgovyx/nubeqa has a lot fewer side effects for most people. I very seldom hear from somebody that has a side effect from Nubeqa.

Orgovyx Like all other ADT drugs has a lot of side effects.

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Profile picture for rlpostrp @rlpostrp

I can't speak to the other drugs, but I can speak to prednisone. I was literally on a 6-day course (Day #1 six-pill dose decreasing to Day #6 one-pill dose) of it two weeks ago for a foot problem. I have had it several times before for other inflammatory and bone issues. I noticed that each time, it just kind of wrung me out a bit. I would doze in front of evening TV...something rare for me. During the day, I lacked my usual punch and energy. The day or so after my last dose of one pill, everything returned to normal. Has your husband really been on prednisone that long? I am guessing that it must be a consistent, one-pill-per-day dosing at the same lower strength???

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@rlpostrp Yes, he is on 5mg daily Prednisone because he is on Abiraterone. It’s the whole onslaught of meds he’s on that all list fatigue as a side effect. It’s all working like it’s supposed to-he’s just exhausted.

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