What's your experience with Orgovyx (relugolix)?

Posted by web265 @web265, Jun 7, 2022

Mods, if you think this redundant, please move or remove. I thought it might be helpful to have an orgovyx thread similar to the lupron thread...

Hello all, I've been reading a lot on this board, posting a little, since my discovery about a year ago.

PSA 11 at discovery 13 just prior to RP, Gleason 4/3, 8 of 12 cores, RP in Sept of 2001.
Margins clean, right pelvic lymph removed & tested clean, minimal invasion in blood vessels and nerve tissue.
PSA 3 mos later <.2
PSA 3 mos later 0.039
PSA 3 mos later 0.091 off to the radiation oncologist.

PSMA PET CT showed nothing.

Orgovyx prescribed and just had my markers inserted and starting radiation in about a week (40 sessions)
My Orgovyx experience so far...about 10 days in...
No particular weakness or fatigue so far, but, hot flashes and "restless leg" at night which is really hurting my ability to sleep.
I work out four days a week and run 2 miles a day after workout. I haven't noticed any weakness yet, seem pretty much the same.

Has anyone discovered any supplements or come across any research as to the restless leg issues and hot flashes? or more to the point, any way to minimize/mitigate? I'll of course talk to the docs on this but I'm looking for something natural, I'd prefer not to get into the "swallow the spider to catch the fly" medicinally.

I've also been taking it at 9am(ish), anyone notice any difference taking it at different times of the day?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

toolbelt | @toolbelt | Mar 11 7:53am

In reply to @captb "So everyone on Medicare or Advantage plan is paying $8000 a yr to take Orgovyx? That's..." + (show)

Go to your Advantage or Part D web site and find "price your medication" or something similar and you will find out what it will cost you.

Stay Strong Brother

kujhawk1978 | @kujhawk1978 | Mar 11 7:27am

In reply to @captb "So everyone on Medicare or Advantage plan is paying $8000 a yr to take Orgovyx? That's..." + (show)

My guess and answers I've seen is not "everyone pays $8k a year. I have TRICARE For Life which also functions as my Part D. a 90 day prescription of Orgovyx runs about $28 co-payment.

web265 | @web265 | Mar 10 7:43am

If you search around in this forum, night sweats or hot flashes, are common side effects of most ADT medications. I've been on Orgovyx for 21 mos now. I get two to three hot flashes a night.

nightsweats | @nightsweats | Mar 10 7:05am

Hi, I started Orgovyx about 2 weeks ago and I am starting to experience night sweats. I can't be certain it's Orgovyx because I started lacosamide for seizures 3 months ago. The seizures and night sweats seem to occur about the same time during sleep. 4-5 am. The seizures seem under control, if the night sweats aren't a substitute. The night sweats however, are easier to contend with.
I read Orgovyx side effects can be hot flashes and lacosamide doesn't have similar side effects. I am experiencing some mild (short lived) double vision and have noticed some weird balance inclinations, but not falling.
Anyone else experience night sweats?
Good luck with treatment and long life.

captb | @captb | Mar 4 11:46am

In reply to @michaelcharles "All Medicare coverage is the same. You must have Medicare Part A (hospital coverage), which is..." + (show)

So everyone on Medicare or Advantage plan is paying $8000 a yr to take Orgovyx? That's what I was told it would cost me.

michaelcharles | @michaelcharles | Mar 3 9:44pm

In reply to @captb "I don't think the treatment process is complex at all. For a 71 year old man..." + (show)

All Medicare coverage is the same.
You must have Medicare Part A (hospital coverage), which is at no premium for most people.
Together with Part B (Drs and Outpatient) for which most people pay a premium.
Medicare Advantage plans must cover everything that Traditional Medicare covers.
So your Medicare and my Medicare are the same and provide the same coverage.
Maybe you should try to consult with a different Urologist, Oncologist or other physician who possibly might agree to prescribe ADT based upon your PSA and scans and forego a biopsy.
Good luck.

captb | @captb | Mar 3 11:57am

In reply to @mgmathisusa "“Know your enemy”. Sun Tsu" + (show)

What?

mgmathisusa | @mgmathisusa | Mar 3 10:41am

“Know your enemy”. Sun Tsu

captb | @captb | Mar 2 11:33am

In reply to @michaelcharles "The Dr needed to complete the workup necessary for a full diagnosis and development of a..." + (show)

I don't think the treatment process is complex at all. For a 71 year old man with advanced metastasized cancer in bones and lymph nodes with a PSA of 287 what on earth could a Biopsy add? My medicare will only cover the cheapest off the shelf treatment so I really don't need the added intrusive and not without complications of a biopsy.

michaelcharles | @michaelcharles | Mar 2 8:10am

The Dr needed to complete the workup necessary for a full diagnosis and development of a treatment plan or referral/inclusion of other specialists.
My MRI was in April and Fusion guided Biopsy in July.
You truncated the process and undermined the investigation needed to fully diagnose and prescribe treatment.
PCa diagnosis and treatment can be complex.
Yes, you have control of the decisions that you make; as does the Dr in treating you.