I am looking for the experiences of those that are taking Regulolix [Orgovyx) with either, Xtandi , Erleada or Daralutamide. My Dr claims that Regulolix doesn't " play well with other ADT orals-guess of the "lutamide family " I listed above.
I heard there are those that are taking Rugulolix with these "lutamides" and I am wondering whether they have experienced problems with these combos.
I didn’t want to switch to Orgovyx this second time in adt since Firmagon was working ok the first time so I continued with it and added Erleada. Aside from little rash, I guess from adding Erleada, no other side effects that I am aware of.
I take Orgovyx and Nubeqa (darolutamide). I have not noticed any more side effects than I had with Orgovyx alone. My side effects are fatigue and hot flashes.
I don't know about "lutamides" which is a meaningless term. But it does "play well" with apalutamide.
ncbi.nlm.nih.gov/pmc/articl...
Your answer is "spot on", especially as to apalutamide and regulolix. Article says:
"Treatment-emergent adverse events (TEAEs) occurred in nine patients during relugolix monotherapy and in eight patients during relugolix + apalutamide coadministration. Hot flush was the most common TEAE reported, in six and four patients, respectively."
Also, Table 2 shows no serious side effects and no grade 3-4 side effects
Although its a small study of 12 I believe. Not clear other than hot flashes what the other low grade TEAEs were [although apparently less than grade 3]
Much thanks
My husband was on Orgovyx and Xtandi. They just needed to be separated by 6 hours, so he took Orgovyx in the morning and Xtandi at night.
Do you know why you took the 2 drugs 6 hours apart. I‘be been taking Xtandi ands Orgovyx together in the morning and haven’t had any more SE’s than when I was on Firmagon/Xtandi.
I'm on Orgovyx and Xtandi... I initially began Firmagon in Nov '21 and made the switch to Orgovyx (pill form of Firmagon, as both are GnRH antagonist) and added Xtandi exactly a year ago...
Firmagon and Orgovyx mono presented very little SEs for me, basically only hot flashes and diminished libido... But once the Xtandi was added, after about 3 months my life really changed. Heavy fatigue like I've never known, mind fog, physical weakness and bouts of deep depression...
I battle these side effects with intense physical exercise and it does help with each of the side effects... My wife holds me up and in addition to the weight lifting and stair climbing I do daily, she gets me out for a 2 mile fast paced walk each day too... I refuse to let these SEs take me over... My hope is endless but yes, this Xtandi is pretty brutal...
I see that you are Medicare age. What is your annual cost for Orgovyx? I just looked at Advantage plans for our area, and most show out-of-pocket as approx $600/mo !!!!! with Kaiser showing potential zero coverage evidently.....$2900/mo !!!!!!!
valid concern with Medicare but keep in mind that under inflation reduction act, max annual out of pocket part D costs will be capped at approximately $3500 in 2024 and $2400 in 2025 and beyond. So under Medicare, cost becomes much less of a factor in choosing drugs and will not prohibit so many people from getting the drugs they need. I researched this pretty thoroughly because I’m on Nubeqa which is really expensive.
Between Medicare D and my secondary (Simply Health Care) my cost is $0.00. I was having injection site issues with the Firmagon so my Dr lobbied for me to get the Orgovyx coverage.
Thanks. Maybe you have an explanation. The list price for Orgovyx seems to be approx 2600/mo. I am seeing that most D supplements have a copay of 25% of Tier 5 drug prices, which would be a copay of $650/mo. Maybe I'm looking at errant Medicare website? Your D coverage has no copay for Orgovyx, which appears to be Tier 5 for most D plans?
A lot of men here seem to be skipping Orgovyx only because of the costs?
Is Simply Health Care a standard part D plan??
Brother, I'm not 100% sure but I think the fact that I was having injection site reactions w/the Firmagon my MO in Florida gallantly argued with Medicare and/or Simply that I needed to be on an antagonist ADT... That was Orgovyx... I think my M. O. also contacted the drug manufacturer and the speciality pharmacy too, and between them all, there is $0.00 co-pay...
How long had you been on Firmagon / Orgovyx mono before adding Xtandi? I'm trying to understand if it could have been the cumulative SEs of relugolix which become more evident after a few months.
I was told after a month on Regulolix [Orgovyx) would need to take anti androgen with Prednosone. My decision so far is to decline taking. The shot might be a better choice for me, But Right now I am taking Fenbendazole desolved in DMSO, Artemisinin, Curcumin along with Ursolic acid, VitD,C, B, k1, k2, A, Melatonin before bed. Also taking Paw Paw. Tudca, and Modified Citris Pectin ( detox ) MCP is very good for cancer patients. Did research on these suppl. most are in there own med studies. If nothing else was told important to detox- detox -detox. and probiotics. Researching benefits of MSM, ellagic acid,Red Brazil Bee Propolis. What I am finding there are many options as a stand alone or to work along side conventional treatments. Strict Diet is very very important I cut out All forms of sugar, and Carbs, and red meat, dairy. Broc, Cali, brussel sprouts, fermented krout, fish, lean chicken, homemade tomato soup Broc and radish sprouts everyday Tofu. No beans. But I did add lentils . This is my choice and journey to stand principled in this protocol.
I’m on Orgovyx and Erleada (Apalutamide) and doing well. Both are paid for by the manufacturers for the time being. Noticeable side effects are minimal- just the usual hot flashes and lack of libido. My bone density did lessen, however; a Dexa Scan indicated Osteopenia..
thanks
Lupron Injectable and Erleada for 6 mo. and primary side effects Hot Flashes and Fatigue. For a 7-10 days after each injection the hot flashes seemed to spike to a moderate level which was enough to continually wake me up at night and likely resulted in more fatigue but then it would taper to manageable level. My doctor documented to get Insurance approval to switch to Orgovyx & Erleada which seems to have eliminated the SE spikes. My PSA under both has reduced PSA 6.5 to .07 with reduction in size and uptake of Mets in recent PETScan. As long as it continues to work, I plan to stay with Orgovyx/Erleada.
thanks
Hi, I’ ve been on Relugolix and Xtandi for over a year then replaced Xtandi with Daraolutimide for over a year and a half now. Clearer thinking on Daro, no hot flashes. Take a look at the ARASENS trial results for a more advanced PCa and you will see the drugs pair nicely with limited side effects. My PSA has ranged between 0.04 & 0.07 during that period. Also my oncologists are nationally recognized as tops in the field. Best
thanks. did you have difficulty getting approved for daralutamide? Looked at ARASENS now, a bit more complicated as includes chemo also.
I thought getting approval for daralutamide, as its so expensive was really difficult.
on Orgovyx and Xtandi. Hot flashes and a higher BP but not much different than Orgovyx on it’s on. Xtandi is super expensive. Manufacturer will give you a credit card for payments
do you think the elevated BP from Orgovyx or Xtandi or the combo?
Taking Orgovyx since relapse last year, added Xtandi (enzalutamide) in January. Both well tolerated, with the normal ADT muscle weakness, some hot flashes. Dry mouth is irritating, but tolerable. Receiving Pluvicto (Lutetium), just had infusion 5 of 6 with almost no side effects other than feeling weak for the next day or two. Still better than the Lupron injections!
Metastatic PCa, still castrate sensitive. Taking Orgovyx + Nubeqa (darolutamide). More convenient than the previous Degarelix injections + Enzalutamide, which superseded Lupron + Enzalutamide. I've been on Orgovyx for about a year and the whole deal for about 2.5 yrs. I can't really say that I feel much difference betw Degarelix and Orgovyx, or Enzalutamide vs Nebeqa. Too many variables. It's hard to say with ADT whether it's the overall time or the specific meds that lead to the objectionable SEs, which, for me, include bone ache, fatigue, lack of motivation (hot flashes came and mostly went...). Sorry for the somewhat vague answer, but that's my summation - i.e. it's hard to tell, maybe that's another SE ringing out, brain fog. I think I'll try more fruit and exercise. All the best! - Tom
thanks, all these responses with use of Orgovyx with Erleada or Xtandi or Daralutamide means I will ask my Dr for more detail as to his data behind his concern
Constipation is a known issue with the Orgovyx
Starting relugolix / Orgovyx 
Xgeva with zytiga, orgovyx and prednisone 
Orgovyx and enzalutamide
Xtandi and Orgovyx 
