Connect
What's your experience with Orgovyx (relugolix)?
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
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.
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.
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.
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.
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
Orgovyx $ 8000 / yr?
Yes and no.
ADT (androgen deprivation therapy) is available in different forms:
Lupron/ Eligard are injectable forms, covered under Part B Medicare, whether Traditional or Advantage plan.
Orgovyx is a pill form covered under an optional/elective Part D Medicare Drug Plan, again whether Traditional or Advantage.
Out of pocket costs to the patient differ.
Using me as an example, I would have paid little to nothing out of pocket for Lupron/Eligard under my Traditional Medicare plus Supplement.
I wanted Orgovyx, which under my Part D drug plan was a 25% patient coinsurance, and my cost was about $ 1,000 / month for 4 months of treatment (I think that I would have moved into a lower out of pocket Plan D stage if I was taking it longer).
There are patient subsidy programs that lower Orgovyx cost based upon income and different Part D plans have different patient coinsurance.
Hope this is helpful.
(and apologies to the forum if I have made any misstatements regarding either pharmaceutical or Medicare coverage)
Starte taking orgovyx about two weeks ago. was looking to see if anyone had muscle/body aches? Finding I have pain in my arm that radiates down from shoulder to elbow (feels like sciatica, but in my arm). Some back soreness as well.
Been trying Advil/Tylenol otc pain meds and not much relief (and not great for my system I am sure)
Was hoping it was maybe a deficiency of some sort I could address with diet as I do not want to add any more pills to my collection.
Any suggestions to reduce the aches? Thx in advance!
Hey @bozly9999
I've had those aches and pains as well. I've been on the orgovyx almost 2 years now and not sure how much of the aches/pains etc.. are from the orgovyx or a normal sign of aging.
My docs recommended a supplement to help protect bones from the normal leaching of minerals that occurs with ADT therapies. It doesn't seem to help any with pain mitigation but it's supposed to help support bone health and strength in the long term. In my case it's Prosteon. It's a non-prescription supplement. That's not a recommendation but you might want to ask your docs if something like that is a good idea. There's likely other similar products on the market.
I am getting some aches, but I think it is the 3-time a week 2 hours at the gym and walking 18 holes twice a week. Fir possible bone loss, those weight bearing exercises and a calcium-vt D supplement may help me.
Stay Strong Brother
I just finished 18 months of Orgovyx. Yes, it did cause muscle and bone pain. I got pain in my hands, and my knees. I got copper infused gloves for my hands, which gave much relief. Sometimes had to put them on in the night. I began a gym routine of every other day to help with bone/muscle loss. The hand pain did begin to resolve itself a few months back. It is difficult to go through the loss of muscle mass, but staying active and the gym did help.