Question to Orgovyx users:Has anyone ... - Advanced Prostate...

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Question to Orgovyx users:Has anyone forgot to take Orgovyx pill?If so what happened?

petrig profile image
29 Replies

I changing Firmagon (after 19 shots/months) to Orgovyx next month.Question to Orgovyx users: Have you ever forgot to take a pill?If so did you feel anything different?

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petrig profile image
petrig
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29 Replies
petabyte profile image
petabyte

I forgot one once but did not feel any different (takes a while for T to recover anyway).

After that I tightened up the process. I schedule it in Apple Health Medications with a critical reminder (loud and scary) if 30 mins late. I also have a pill container with the days on it so if I am unsure I can check.

petrig profile image
petrig in reply topetabyte

I pimped up a pill container..😎Its big and stylish so it suite for my wifes "decor"...

Pill container.
petabyte profile image
petabyte in reply topetrig

😁 I recognise that! I keep screws and nails in one of those...

j-o-h-n profile image
j-o-h-n in reply topetabyte

That's ironic, I keep my screws and nails in my empty medicine bottles.

Good Luck, Good Health and Good Humor.

j-o-h-n

Mgtd profile image
Mgtd in reply topetrig

Love it! A Handyman’s special. I am still smiling just thinking about it.

Wonder what the wife would say if I had that on the counter?

GP24 profile image
GP24

Testosteron will recover about nine to twelve months after stopping Firmagon. It recovers a bit sooner with Orgovyx. But you can forget to take it for a few days, no problem.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toGP24

What's the basis of your claim GP? You seem very confident. The material I've read indicate it's actually a risk. The pharmacokinetics of Orgovyx show a very fast metabolism cycle.

GP24 profile image
GP24 in reply toJohnInTheMiddle

I do not recommend to forget your pills. But if you start with Orgovyx it will push down testosterone within a week to as low as 38 ng/ml. If you go on a trip over the weekend and forget your pills, it will not rise above 50 ng/ml, the castrate level. If you take Orgovyx again it will push T back to 38 ng/ml and lower. The weekend without Orgovyx will not shorten your overall survival. Orgovyx will not work if you do not take the pills, but T will need a while to get above castrate level.

GP24 profile image
GP24 in reply toGP24

This is a chart from the HERO trial: nejm.org/doi/full/10.1056/N... I drew the line at 50 ng/ml. It takes 9 days to get above the castrate level of 50 ng/ml.

Testosterone recovery with Relugolix
MWPesaPharmD profile image
MWPesaPharmD in reply toGP24

As one of the lurking medical experts, I would point out that the graph is a mean (or average) -- your results may and likely will vary.

That being said, at least alerting your health care team is a conservative step, but will likely set off no alarm bells on their end.

VictoryPC profile image
VictoryPC in reply toGP24

I totally agree. Anybody who's done 19 shots of Firmagon doesn't have to be concerned about missing a dose of Orgovyx. That's Scarecrow fear for sure.

Tall_Allen profile image
Tall_Allen

Orgovyx has a half-life of only 24 hours. You are right to take compliance seriously.

dagreer profile image
dagreer

How quickly would the testosterone rise after missing 2 days? So I guess blood level would be 1/4 of normal?

CAMPSOUPS profile image
CAMPSOUPS

This is one of those times when I ask that someone (you) please read the poster's bio. The difference in the posters diagnosis, prognosis and treatment needs is vastly different from yours. To confidently tell him "no worries" is kinda scary dont ya think.

JohnInTheMiddle profile image
JohnInTheMiddle in reply toCAMPSOUPS

"Scary" - I think so!

JohnInTheMiddle profile image
JohnInTheMiddle

"Orgovyx is strong" is about as meaningless as saying "Mars is high in the sky", in the context here. And your evidence-free claim that there's no need to worry about missing a few doses of some medication for metastatic prostate cancer is just nuts.

I see in your bio you highlight "PC-SPES", some proprietary concoction apparently banned in a few jurisdictions and sometimes randomly including among other things diethylstilbestrol and/or warfarin.

You report doing well for 10 years in the face of cancer; I wish you continued success.

strombolis profile image
strombolis

I didn’t have enough on a trip to Mexico. Missed 5 days. My PSA was still undetectable.

petrig profile image
petrig in reply tostrombolis

You still have your prostate?

austinsurvivor profile image
austinsurvivor

been on Orgovyx almost 4 years now, and may have missed 3-4 days in that entire time. You feel no change missing 1 day. Skip a month and if your T comes back you will feel a change but not from 1-2 days missed as it takes a lot longer for T production to resume.

petrig profile image
petrig in reply toaustinsurvivor

Do you still have your prostate?

JohnInTheMiddle profile image
JohnInTheMiddle in reply toaustinsurvivor

Why are we talking about feelings? I had no symptoms and then because of a backache was diagnosed with Stage 4B high volume metastatic prostate cancer, with three compromised vertebrae. Prior to the backache there were no feelings I could reference. This is medicine not psychology.

Mgtd profile image
Mgtd in reply toJohnInTheMiddle

John I have no science other than my “feelings” to share but they maybe worth considering.

Prior to HRT I had a T level of about 700. When I was younger it was in the 1000 range. When I stopped HRT and began testing my T level again I could actually feel the difference as the T was rising. It took just 2 months to return from almost 0 to my normal level of 700.

This feeling became really noticeable as my T rose through about 150. The improvement in “feelings” continued to improve as the T rose. I have finally stabilized near my 700 level at 80.

I could feel the rising T really affected and improved my overall mental and physical feeling. As an athlete all my life perhaps I am just more aware of my bodies physical responses.

Just think how changes in atmospheric pressure does affect different people.

wilcoxsaw profile image
wilcoxsaw

Rather than ask a bunch of non-medical professionals check the orgovyx website, or talk to your oncologist. Too many people without medical credentials giving medical advice not only on this thread but many others.

I have been on orgovyx a total of approximately 36 months intermittently over the past six years but I have never had a problem remembering to take my drug. So I cannot speak from experience what it might feel like to miss it for one day. I do know that the manufacturer's website states that if you miss it more than a certain number of days you are required to take a loading dose again instead of just a daily dose. Refer to the drug manufacturers information or call them for further details.

AlmostnoHope profile image
AlmostnoHope in reply towilcoxsaw

No medical scarecrows is what they are.

petrig profile image
petrig in reply towilcoxsaw

Of course I have send email to pharmaceutical factory ,talked to my fharmacist,asked for my doctor,checked from trials etc etc...But only here can I ask for experts by experience.

Im very meticulous about things ,especially about my medications.Maybe even persnickety .Thanks to my german/finnish heritace.🥸

wilcoxsaw profile image
wilcoxsaw in reply topetrig

Some feel they are experts by experience on these forums, and some give medical advice unfortunately. Your oncologist and the Orgovyx mfg are better resources, glad to hear you've contacted both.

If you're meticulous about your medications as you say, then missing a dose should not be a concern. Good luck with your new medication. You'll no longer have to endure the injection site reaction of firmagon.

JohnInTheMiddle profile image
JohnInTheMiddle in reply towilcoxsaw

Yeah they say you might need a loading dose - if you miss a day or whatever. And they emphasize how important it is to take it every day at the same time. But what typical guidance for Relugolix/Orgovyx doesn't say is the consequences of this disruption of the regular pattern. In the non-academic literature that I've come across I've never seen consequences laid out.

It probably varies person to person, but it's likely and such a circumstance that you have some manufacture of testosterone, even a small amounts. And then we wonder. Because all of us at some point become resistant. And what causes resistance? Probably multiple things. But is it possible that one path to resistance is driven by periodic testosterone spikes in life's inevitable disorders? We don't know.

Some people choose to go on and off their meds, say in the context of BAT. But that's a deliberate approach, regardless of whether it works or not. We're just talking about casually missing a dose or two and risking a testosterone spike.

wilcoxsaw profile image
wilcoxsaw in reply toJohnInTheMiddle

I can't speak to the original question about how one would feel missing a dose never having done that. The orgovyx dosing information states that if a patient misses more than 7 days they are required to take a loading dose and then follow that up with a normal daily dose thereafter. It is not that hard to remember to take one pill a day, if a patient is unable to do that he is best to avoid taking oral medications.

CRPCMan profile image
CRPCMan

I am so with you on this.

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