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ORGOVYX- Good,bad and ugly , regarding Side effects- especially if side effects are easiest for first 6 months-thanks

JWS13 profile image
14 Replies

Starting on Orgovyx in 7 days...Need to know your experiences and Side Effects (good ,bad, ugly). Any tips on how you dealt with the side effects would be greatly appreciated.

Do you start off with 3 tablets the first day then one each day thereafter?

Is it better to take morning or nite? with food?

I am taking it for 4 -6 months , is there a risk in that short time of gynecomastia (breast growth if only 4 months) ?

Is the first 4-6 months easiest? do SE get worse the longer you take it?

Please let me know what remedies you used for : Hot flashes estrogen patches) breasts,(radiation), diabetes (melatonin), fatigue (exercise) , ETC.

all responses welcome thanks...any great tips welcomed>>

68, Gleason 4+3, PSMA-no mets, ,psa 6

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JWS13
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14 Replies
Yearofthecow profile image
Yearofthecow

What does your Doctor say?

JWS13 profile image
JWS13 in reply to Yearofthecow

He says to ask the people in the group you belong to what their side effects were and how they dealt with it (because everyone's different)...but thanks for the input..

Yearofthecow profile image
Yearofthecow in reply to JWS13

The only thing I might suggest if you don’t get enough replies is Putting “ORGOVYX” in the search tool if you haven’t done so already

Wishing you good results

GSDF profile image
GSDF

I've been on Orgo for 6 months. I find the side effects identical to Firmagon which I was on formerly. Keep in mind, side effects one experiences on these ADT drugs are not so much from the drug itself, but from your body's reaction to the testosterone shutdown in your body.For me, the only side effects I have are the libido shutdown and an occasional hot flash. Other than that, I can tell you I have no other side effects such as the gynecomastia that you mentioned, or depression, etc...

I believe I am tolerating it so well because I go to the gym 3x week and do weight training exercises as well as running a mile on these days. You'll find, as I did, men who do strength training exercises have minimal side effects from ADT drugs.

I take the one pill before bed because a common s/e in all ADT drugs is fatigue. I experience no fatigue during the day. I didn't need to initialize with 3 pills because I went directly to Orgo from Firmagon.

I hope this helps brother, and I hope your treatment proves most successful!

London441 profile image
London441

4-6 months should be no problem. Side effects are cumulative yes, but for most start well after 6 months.

Regardless, weight training and cardiovascular exercise are the most important things you can do to mitigate all the side effects, and in fact are the most important things you can do for your health and longevity as a older person regardless of the presence or absence of disease.

KocoPr profile image
KocoPr

i went from lupron (abt 5 months) to Orgovyx, did the 3 pill loading dose. Switched from lupron shot to Orgo because shots were killing my sciatica.

Been on Org and darolutamide for 8months.

I have very minor motivational symptoms, but i take SARMS Osterine and cardarine and exercise 3xweek with weights. My motivation problem is cardio which i am trying to do. I think if i have a very specific end goal this summer like climbing my Kathadin in Maine or mt Washington for a sunrise or sunset photo shot this fall that might help. I am rescuing a 5 month old puppy tomorrow so that will also get me out the door more often rain or shine.

One thing the befuddles me is why doctors don’t measure your estrodiol E2 prescribe a low dose accordingly. That will stop the hot flashes.

Boonster profile image
Boonster

Hi, answers below are keyed to your specific questions:

Do you start off with 3 tablets the first day then one each day thereafter?

Yes. The loading dose was 3 tablets.

Is it better to take morning or nite? with food?

I've been on Orgovyx for about 18 months. I have been taking it in the morning, for no particular reason except this: it was easier never to forget taking the medication.

I am taking it for 4 -6 months , is there a risk in that short time of gynecomastia (breast growth if only 4 months) ?

I have experienced some gynecomastia as I continued to take the drug. But nothing so difficult or disfiguring that it led me to consider intervention.

Is the first 4-6 months easiest? do SE get worse the longer you take it?

The SE have not varied that much throughout the ~ 18 months of taking Orgovyx.

Please let me know what remedies you used for : Hot flashes estrogen patches) breasts,(radiation), diabetes (melatonin), fatigue (exercise) , ETC.

All the SE's have been manageable. And the results have been great: My PSA has been undetectable ever since the second month.

Good luck!

JWS13 profile image
JWS13 in reply to Boonster

did you retain the breast tissue? how long were you taking the orgovyx before the breast tissue started to appear? after the 6 month period ?thanks for your response..

Boonster profile image
Boonster in reply to JWS13

Started about 7 - 9 months into Orgovyx, as I recall. I wasn't concerned that much about it, so I didn't take any strong note of it. It has stabilized, which is to say that I have retained it -- so far. If it doesn't go away after I have stopped taking Orgovyx, I may have some cosmetic surgery to deal with it.

Horse12888 profile image
Horse12888

I was on Eligard, but I the SEs are the same, as the accrue from low T. In my experience, most of them fairly constant through treatment. What I experienced, however, was worsening depression, as I became increasingly unable to deal with pounding misery.

Mike404 profile image
Mike404

I did SBRT at UCLA with the same stats. I took Orgovyx for four months with limited side effects. I exercised regularly. After my four month bridge ran out, I decided to save the $3k a month out of pocket and go with a Lupron shot. Theory being all the side effects come from loss of T.

Big mistake. I have hives at the injection site and elsewhere. I also have headaches, backaches, and general joint and muscle pain. Clearly it’s the injection and not the lack of T.

Curious what the decision point would be with you for 4 or 6 months? I’m inclined to skip the last Lupron injection, so that would leave me at five months.

JWS13 profile image
JWS13 in reply to Mike404

At this point i would go with the 5 months...if i was having relatively NO SE , I would go to the 6 months for the extra protection!

northshoreguy profile image
northshoreguy

Lupron, Eligard for three months, orgovyx for 19 months. Was supposed to go 24 months in total but stopped after22 months as the side effects were getting to be too much. Multi hot flashes daily, complete loss of libido and depression. Been off for 9 months now and all the side effects have disappeared. My last appointment on12/17/22 and psa is still .02. Life is good.

BMT07 profile image
BMT07

I’ve been on Orgovyx for 1 month tomorrow and so far no side effects. Per my doctors orders I’ve worked out every day, which he said helps with the side effects. So far my experience says this is a much better option than Lupron. Good luck.

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