What's your experience with Orgovyx (relugolix)?

I started Orgovyx three months ago. SEs include a pounding heart, sleeplessness, a jelly roll developing at my waist, fatigue, what I would characterize as a complete loss of libido, brain fog and occasional dizziness—that may be the result of higher blood pressure (often in the upper 170s/80s), occasional blurred vision (likely blood pressure-related), and hot flashes. I take the dose mid-morn. SEs occur randomly all day and night. My EBRT is to start in August. It was originally scheduled for May, but my SpaceOr (now Barrigel) procedures got delayed.

I'm on Original Medicare with Part D provided by a low premium Aetna plan. I selected the low premium policy because up until August 2023, I'd never needed special drugs. Oddly, depending on the pharmacy I check, price can vary enormously (700 to 2400 per month). I now receive it from a specialty pharmacy called Onco, in Louisville, Kentucky, for $678 per 30 doses. (My RO found this place and referred me to it.) I believe after I reach approx. $3000 out of pocket, it will be gratis. My RO recommended Orgovyx as an alternative to Lupron because it allows a more rapid recovery of testosterone post-ADT.

Now, I have a question for anyone in the know. Orgovyx feels like a very strong drug to me. I understand that the same dose is prescribed whether you weigh 300 lbs or 150 lbs. I'm on the lighter side and am sorely tempted to start an experiment of taking the dose every other day versus daily. My PSA has dropped from 16.8 to 1.45 after two months. If it continues to drop after my experiment, then it seems the Orgovyx dosage might be reduced if a person's weight is considered. Is this just wishful thinking?

I was diagnosed with a PSA level of 5.5 two years ago. Eight months earlier, it was 2.5. I wasn't feeling well, so I had a complete battery of tests, all of which came back negative. My doctor suggested running a PSA test, which I agreed to, and thus began my journey.

I had a prostatectomy on January 16, 2023. Four lymph nodes and the left seminal vesicles were positive and removed, along with a total of 19 lymph nodes but there was no distant spread Stage 4a. My PSA level was undetectable 8 weeks post-surgery and remained undetectable for the first 6 months. Then it started to rise slowly. When it reached 0.13. Off to the oncologist on April 9, 2024, and started Orgovyx.

Before starting radiation therapy, my PSA was undetectable again because of this drug I began radiation on April 23, 2024.

The side effects have been challenging: leakage, hot flashes, frequent night sweats, lack of sleep, elevated blood sugar, and low hemoglobin. The most concerning development was double vision, which began on May 31, 2024. My oncologist was alarmed and ordered a battery of tests, all of which came back negative, including an MRI of the brain and orbits.

My question is, has anyone experienced double vision as a side effect, which is listed on the Mayo Clinic site? How long did it take for normal vision to return? My ophthalmologist diagnosed it as palsy of the 6th cranial nerve and said it should take 4 to 6 weeks to recover (fingers crossed).

Lastly, my drug cost me $1100 first dose and has been consistent $603 for the refills, small price to pay for life. I'm 69 and hope to make many more b-days.

I was diagnosed with a PSA level of 5.5 two years ago. Eight months earlier, it was 2.5. I wasn't feeling well, so I had a complete battery of tests, all of which came back negative. My doctor suggested running a PSA test, which I agreed to, and thus began my journey.

I had a prostatectomy on January 16, 2023. Four lymph nodes and the left seminal vesicles were positive and removed, along with a total of 19 lymph nodes but there was no distant spread Stage 4a. My PSA level was undetectable 8 weeks post-surgery and remained undetectable for the first 6 months. Then it started to rise slowly. When it reached 0.13. Off to the oncologist on April 9, 2024, and started Orgovyx.

Before starting radiation therapy, my PSA was undetectable again because of this drug I began radiation on April 23, 2024.

The side effects have been challenging: leakage, hot flashes, frequent night sweats, lack of sleep, elevated blood sugar, and low hemoglobin. The most concerning development was double vision, which began on May 31, 2024. My oncologist was alarmed and ordered a battery of tests, all of which came back negative, including an MRI of the brain and orbits.

My question is, has anyone experienced double vision as a side effect, which is listed on the Mayo Clinic site? How long did it take for normal vision to return? My ophthalmologist diagnosed it as palsy of the 6th cranial nerve and said it should take 4 to 6 weeks to recover (fingers crossed).

Lastly, my drug cost me $1100 first dose and has been consistent $603 for the refills, small price to pay for life. I'm 69 and hope to make many more b-days.

I'm 75 and had similar experiences. Diagnosed in 2015, a prostatectomy, followed by 37 rounds of radiation treatments. I was good until the PSA began to rise in 2021. In December of 2023, the PSA hit 2.9 and I began Orgovyx in January 2024. It knocked down my T below 7 and the PSA is undetectable.

The only side effects I've had are lack of sleep, weight gain (15 lbs) and hot flashes 24x7. Mayo had me try gabapentin for the hot flashes, but, it does nothing for me. My PSMA PET scan in January was negative.

Regarding the cost ... yes it's expensive. I receive my Orgovyx directly from Mayo Clinic in Rochester via FedEx. I believe my initial couple of months was $980/mo. I assume you're on Medicare(?) You'll hit the donut hole and then go into the catastrophic range on this med .... which is where I am right now. This means the cost is zero dollars for me for the rest of the year. As you said, it's a price well worth the cost.

started orgovyx almost 3 weeks ago..initial fatigue with loading dose. Had some insomnia..going to the gym..but am wondering does body just adjust to it? Like I don't get night time erections at the moment but during the day, they are pretty firm as before.. i worry sometimes it's not working lol.

But..definitely get the hot flashes..quite a bit..

I had a great run for 14 months with just Orgovyx; hot flashes were rare, weight gain, and gynecomastia were moderate. Unfortunately, the PSA number started to increase so my Oncologist added in Xtandi. Since then the PSA number is back down to less than 2, the weight gain, an gynecomastia have steadily increased. Unfortunately, exercising, and dieting on my own have not shown any results in controlling these side effects. My nutritionist has recommended either Nutrisystem, or Weight watchers.

I hope this can help you in some way. All the best.

Philnob

I suggest using a personal trainer with good qualifications to ensure that your workout is appropriate for your goals

I’m following the following general approach 20-30 minutes of aerobic exercise at a moderate heart rate level. Then 45 minutes of weightlifting and finally 10-15 minutes of stretching.

I do this 5 times a week and find that I burn enough calories that thus far (2 months of zytiga and orgovyx) I have maintained my weight.

I’ve read that it’s crucial to maintain muscle mass to avoid systemic diseases, so I’ve been very disciplined about this routine. Further, even when I’m feeling fatigued, that with willpower, getting in my workout, improves my energy level and general wellbeing.

Hope my limited experience helps!