What's your experience with Orgovyx (relugolix)?

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.

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 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?

What kind of Cigna insurance do you have? I have Cigna open access and wondering how much orgovyx will cost. Cigna said they need pre authorization before they tell me how much it is. My husband haha been told he will be given the 3 month shot of lupron. But when I read the side effects I prefer orgovyx. He did extremely well on his loading dose with dexitral.

What kind of Cigna insurance do you have? I have Cigna open access and wondering how much orgovyx will cost. Cigna said they need pre authorization before they tell me how much it is. My husband haha been told he will be given the 3 month shot of lupron. But when I read the side effects I prefer orgovyx. He did extremely well on his loading dose with dexitral.

It's great to find a thread specific to Orgovyx users! I've learned a lot already reading through and was initially trying to get a prognosis for my side effects. I started taking O 12 days ago and am feeling much better than expected. I get a number of daily flushes/flashes, but, they range from pleasant (when I am feeling cold) to a light sweat. I decided to take pills each evening after dinner thinking I'd sleep through most all symptoms and that has been the case so far. There are so many variables with different guy's experiences that I can't predict, with any level of accuracy, what will happen to me. However, I now see a more narrow range of possible outcomes.

I didn't see any comments on insurance coverage and net cost of the drug. Clearly, that will vary tremendously with a variety of factors. So far, I'm quite unhappy with the Cigna insurance coverage that I received for the first 30 day supply. I just started Medicare in May after leaving the company plan. I bought Cigna Medicare Extra Part D after asking for a plan with highest premiums and lowest co-pays. A 30 Days supply Coverage was:
Billed: $2,632.44
Plan Paid: $1,266.22
I Paid: $1,366.22 (includes $100 ded. which is now met)
Of course, I'm investigating with Cigna and Orgovyx what is going on and what they can do, if anything. So far, I'm hearing nothing but rejections for assistance. I am astonished when I read on the Orgovyx website:
IF YOU HAVE MEDICARE PART D: orgovyxpricing.com
3 out of 4 ORGOVYX patients paid
$100 or less per month on average*
That sounds like false marketing to me and they can't explain why I'm not 3 out of 4. I'm advised to fill out an application which then gets rejected.

While I likely won't qualify for low income assistance, I paid for Cigna's top plan knowing I might need pricey drugs and expected them to have more coverage. Hence, I'm wondering if anyone has had the same experience and what remedies may exist for a drug that has no generic or alternative other than a different class (agonist vs. antagonist)?

Kishan
Reiter urology
SBRT resolved two lymph nodes and continues to shrink 3 rd

mammoth3414:
I am sorry that you have to go through with all this. So SBRT doesn't kill the cancer in all the lymph nodes? Who is your Radiation Oncologist? Mine is Amar Kishan.
wish you the best.