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?
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Web265, I’ve been on Orgovyx going on 3 months now. Regarding restless leg, I experienced this prior to ADT. I discovered (by way of a cousin of mine) that aspirin helps. I take one Bayer aspirin, 320 mg, at night when I feel it coming on, but this doesn’t happen every day. I suffer from RLS once or twice a week. Oddly, the single aspirin appears to work for me and my wife. Have not done any research on this. As to hot flashes, I’m learning to live with them. I also take my pill in the mornings at about 9.
I started ORGOVYX on April 1st. I am paying $520/Month copay. Not bad compared to $3,000/month with no insurance coverage!
I went on Orgovyx September 1, 2022. Then i had 45 radiation treatments. I did have some hot flashes, not long lasting, several per day. During radiation I took an afternoon nap, but did keep up my yeard work (9 homes) going to the gym 3 times a week, rowing and walking. Did notice fatigue and some muscle loss. I did not gain weight, as I am very busy. The biggest complaint was weakness in the knees and some pain. I had pain in my hands, but used copper infused gloves which helped. My first psa after stopping radiation was 0.04. I took orgovyx for 18 months, just stopped 1 month ago. I had a testosterone test that just came back at 505....it is rising fast. My first post psa at 1 month off orgovyx is .1. Hope that doesn't raise fast!! I did not lose my libido through the process, but it did lessen, that has gone back to more normal. Night time erections are back as well. I do/did follow a strict diet. I don't drink any alcohol (never did more than maybe 1 beer a week) I avoid red meat, I eat salad, we don't do processed foods, especially meats. I supplement with high quality protein and collagen, especially so during radiation. I do drink lots of milk, which I always have. We do not eat outside the home often, my wife is a good cook, and she is in charge of the diet. I would have to say my experience with orgovyx was more positive than I thought it might be, and so was the radiation.
Generally, yes. Your cost will vary dependent on your specific Part D carrier. You should be able to go to your carrier's web portal and find a "determine the cost of a drug" or similar button.
Does Medicare part D cover Orgovyx ?
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.
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
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.
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!
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)