Is relugolix reliable as compared to the adt injections ? Has anyone been only on that and not the injections ? How soon does it bring the testosterone levels down as compared to the injections ?
I am in India and it is available here at around 100 dollars for a box of 30 tablets of 120 mg each
No injections here. Orgovyx since the start. After about 6 weeks had a testosterone level of < 3.
The HERO trial, which was used to get Orgovyx approved, showed a slightly higher efficacy than the ADT injections. It brings down testosterone very fast, in about two to three days. Therefore there is no Bicalutamide needed before Orgovyx.
Wow! I would take Relugolix if I could. But it's not funded yet in Canada. I don't even know if it's available for purchase privately but the cost is extremely high. It looks like from your perspective it is actually affordable. May I ask if you did your due diligence in the quality of the product that you're acquiring? And of course it's a GnRH antagonist 😃. Note that it is apparently metabolized very quickly and it's important not to miss a dose every single day.
What do you mean by metabolised quickly ?
It’s made by a couple of reputable companies here but doctors say they don’t have much experience with it yet.
Some drugs might have a half-life of a couple of days or a week in your system. Apparently for the daily Relugolix it's pretty short. And all the instructions say you must take it at the same time every day. And if you miss you must take it as soon as possible during the first part of the day. Somewhere I read about this drug's "pharmacokinetics".
Compliance is a big issue for senior citizens taking medications. In this case it's especially important to have pill-taking discipline (there's all kinds of systems such as little plastic boxes for each day of the week that can help etc).
If you miss apparently a week you might have to restart the loading dose. And the risk is if the blood level is dropping very quickly and then the body might restart making a little bit of testosterone. Which then signals to the prostate cancer cells to wake up. We don't want them to wake up.
We want to maintain as complete suppression of testosterone production as possible.
Thanks 😊. Compliance won’t be much of an issue as I will take care of that. My only issue is that an Indian company has just started making it since Jan 2024 so doctors don’t yet have experience with how well it does. Thinking will get the injection first time and in my next appt with MO after two weeks will ask him more about relugolix
You're on your own here. Maybe Tall Alan will tell you not to make your own schedule of mix and match drugs.
Hi JohnInTheMiddle. Just want to let you know that Relugolix is now approved in Canada. I started it today. Your oncologist needs to register you in a special program that gives you a card that you present to the drugstore and then you do not pay out of pocket for it.
Hi Mascouche! I really appreciate your note - I had seen something about the federal government approving it - but I don't think it's on the Ontario OHIP formulary yet. Does this mean the vendor is providing an Early Access program? May I ask what province you are in? Also congratulations on starting Relugolix today! Also where are you in your PCa situation?
I believe it is some kind of early access program.
I live in Quebec.
In case it helps, the card I was given for Orgovyx/Relugolix mentions "Sumitomo Pharma".
My PCa situation is a PSA of 1.67 (taken 2 days ago) and a bone scan from early May showing a small metastasis to the right shoulder blade. I have begun Relugolix today and I have received some Xtandi that I will only begin in 2-3 weeks so that if I get side-effects, I can then tell which of those two new drugs generated it.
A big success for you Mascouche! And the vendor reference is very helpful. Also I just read your bio and the amazing journey that you have been on. It's inspiring the fight you're making. And the whole business of some drugs ruining one's cognition and delivering fatigue is so true. I know Tall Allen won't like this but I do hope your hydroxychloroquine and your ivermectin are very helpful. And now the new Xtandi and Relugolix should be a big success for you.
No injections for me. Just finished 18 months of Orgovyx. Brought testosterone down to 5 very fast. As well as when I stopped testosterone back to 250 in 1 month and currently rising.
My dad who is going to turn 83 will be starting the orgovyx soon. Loading dose I am told is 3 tablets - Did that cause any discomfort ? What side effects did you have on orgovyx.
I didn't have a loading dose. Just started 120mg per day. I was 50 years old when I started. Side effects, no libido = no sex life, hot flashes once a day, muscle weakness after a few months. So you need to do light weight or resistance training workouts to keep up your strength. Your father should keep his doctor informed of how he's feeling and he should get through Orgovyx fine.
what about psa? How often are you checking it?
I check every month to keep on top of things. Do what your doctor recommends
Just finished 12 months of Orgovyx.
Prior ADT was Lupron for 18 months.
As others have said:
No flare
Faster to castration
Higher sustained castration while on it.
Lower cardiovascular side effect profile
Faster recovery of T when coming off it.
Usual side effects, fatigue, muscle and joint stiffness, hot flashes, weight gain.
Were they better than Lupron, hard to say, qualitatively yes but still can I quantify that, no.
I exercised throughout the twelve months, maybe that mitigates the severity of the side effects.
It was not expensive for me, TRICARE for Life functions as my Part D, so $68 for three months.
As others have said, it takes self discipline to take daily, forgetting it is not a good option!
For some, insurance coverage makes it hard, others have doctors not current in treatment options and a few have doctors with financial issues who don't like not doing Lupron so there are no charges for administering the shot!
Kevin
thank you.
I was on Relugolix for 6months and my PSA dropped from 11.2 to 0.014 and testerone was 2.5. I was on 120 mg for 2 years. Just got off of it this May. Sorry for the spelling.
How did you feel on it. Did you also take the starting loading dose of 3 tablets together ?
Yes started on same dosage. Biggest problem was hot flashes and constipation once in a while. I had triple by-pass a few months before PC was discovered and my doctor said this is the best drug if you have heart problems. My readings have been excellent while I was on it. Don’t have to go back till Jan. 2025. I wish you the best! Hang in there.
It's very reliable (just eliminates testosterone) and your dr should test periodically to be certain. Just more convenient than going for shots and less pain (and possibly less cognitive and cardiac side effects than Lupron). Lupron is the least reliable as it has to work forv3 months.
if you Need it, take it. Far better than Lupron. I took Relogolix and Darolutemide for about ten months. It knocked my PSA down from 125 to .002 in about six months. Lost libido and had bone density issues, but it works as advertised . Note that I also do HIIT swimming, weights, plant based diets and many of the supplements recommended by Jane McLelland
I personally did not respond to Relugolix. After nearly 5 weeks my T level was still above 250. I was given Firmagon for 1 month and then put on Lupron (6 month shots). As always, everyone responds to drugs differently. I know several men it was not effective and I know others it has been highly effective. My MO has experienced this as well.
What was your baseline T ? Thanks for sharing. Actually it’s the first time I heard it not being effective
Minimally my doctor wanted me below 50. Firmagon took me there in 2 days, actually below 20. Lupron maintained it. Cost was not a factor as I was approved by the manufacturer for $10 co-pay on Orgovyx. I just came off 2 years on ADT, stopping abiraterone & prednisone on May 20. My last Lupron shot was November of 2023. I had minimal side effects and attributed much of that to maintaining activity level and exercise.
Thanks. I meant do you know what was your testosterone level before starting orgovyx ? While you were on it did you experience side effects.
Planning to start dad today on it and then will do a T test in a week or so to see if it has gone down below baseline
No, the point of ADT is chemical castration. Beginning T level is irrelevant. The advantage for many is reduced cardiac issues on Relugolix. I have a Mitral Regurgitation and have no issues on Lupron. Relugolix has been shown to be effective in greater than 90% of men. I only point out my experience as a point that medications can have different reactions in different people.
Thank you. Did you get side effects with the Firmagon ?
It was a means to get T level down before salvage radiation. Mild hot flashes and the injections were in the stomach area causes some irritation. The Lupron shots were in the hips, alternating each shot. Mild hot flashes, a bit of fatigue once in a while, and towards the end of the treatment period, last 3 months or so, a sore lower back when waking up that subsided with some exercise.
I have been on Orgovyx since mid-January of this year, so almost 5 months. T went from 400+ to <3 and PSA now down to 0.02. Very mild side effects for me, but I'm a gym rat, and also do a lot of walking and elliptical stuff, so that probably helps me.
It ABSOLUTLEY works even better than injections; no side effects from the injections, testosterone drops very quickly and it is my understanding that it will recover sooner when done with treatment.
Has anyone taken Opdivo with Docetaxel?Starting relugolix - when to retest testosterone 
Confused - who can give me ADT injections?
Length of Treatment for Orgovyx (Relugolix) versus Lupron and other Longer Acting ADT drugs as Adjuvant to RT or Used for IADT?
ADT + darolutamide + docetaxel (ARASENS trial) has anyone tried it?
