Is anyone using Oral Relugolix?
It looks like I will likely have to go back on Androgen-Deprivation Therapy, and I'm wondering if anyone has any personal information they have with it?
How much after insurance are you paying?
If you've had Luprin before, is this better?
Any issues with stomach sensitivity?
I've been on it for about five months and have no stomach issues .what I like about it is when I go off adt in one year (hopefully) my qol will recover within the month (so I'm told)I started out with the two month free trial and now my insurance is covering it completely. Hope this helps
What insurance do you have?
Yes it helps a lot thank you!
I have Capital Blue Cross and have a copay of $50/month. I'm on my 23rd day of taking Orgovyx and I can deal with the hot flashes and minor fatigue, but what's concerning to me is that off and on I feel like there's something heavy on my chest and with that extreme anxiety, which I hadn't seen in any of the side effect listings. A secondary concern to that is brain fog. I'm being treated for PCa recurrence after prostatectomy, so I'll only be on it for 6 months. I'm trying to hang in there for the duration, but...
I started 6 weeks ago after a year vacation due to rising psa, took 2 years of eligard before the vacation. It seems to have lighter side effects for the moment and god knows what will be in the future.
I will test for psa and testosterone in 2 weeks, so don't know yet how good it's working.
Under our Medicare part d it would have cost $600 per month. Since the price varies by company, you should call you insurer to find out.
My husband has been on it for 2 months and has had no side effects, not even hot flashes. We have excellus blue cross and he pays $10 a month for it.
$10 per month
Starting 4th month
No side effects, but really didn't have any with Lupron either with the exception of fatigue and minor, like 30 second hot flashes, maybe once or twice a week. Libido completely gone but not a primary concern (for me) as I have injections to cover the need should it arise (pun)... Overall is all good!
Using a specialty pharmacy as provider, they list the pharmacy's on their website (drug manufacturer) and they're great, call and ship monthly.
Just started month 4 on it after switching from Lupron, which I was on for 2 months. For me, it is much more agreeable than Lupron. I have almost non-existent hot flashes, more energy, and even slight libido, whereas on Lupron I was in hell from day 1. The biggest downside I'm having is sleeping. I'm lucky to get 5 hours a night as I wake around 3-4am everyday. My BCBS insurance pays 100%, so that's also a plus as I paid a small co-pay with lupron. Still planning a taking a holiday once me and my doctor agree on the holiday plan. Good luck!
Hello, thanks for the reply. I did get on Relugolix. Almost a month now. Way better than Lupron for side affects. I experienced some issues with sleep, but not terribly bad. I read the Bible for a bit, pray, give it to God, and He helps me conk out. I have hot flashes, but not soaking the bed like I was on Lupron. I have a battery fan over the head of my bed, and just reach up, click it on and throw the covers back. Five min later I click it off cover up and roll back, sometimes to sleep. It's up and down thing. I'm retired so a bit of a sleep in isn't so bad. Best of luck to you!
In my first week taking it. I've so far had some periods of profound weariness and yesterday headache. Sleeping OK. Copay from insurance would be $50, but signed up for copay assistance program on manufacturer web site and copay is $10.
@ MobilityTech: I started Relugolix (Orgovyx) at the end of March. My PSA was 3.90 at that time. Last PSA test is at 0.80. Testosterone disappeared completely within two weeks of starting Relugolix. Side effects minimal - a few minor hot flashes but those did not start until about two months after starting Relugolix. A little bit of afternoon weariness which I have "cured" by taking Relugolix at noon instead of with breakfast. Only annoying side effect, so far, is constipation which I take care with one daily Colace. I pay a $75.00 per month copay. A specialty pharmacy delivers my monthly prescription of Relugolix to my home.
It took three attempts by my medical oncologist to get insurance (Medicare Part D) to pay for Relugolix. Those three attempts were all done over the span of one week. The selling point was that Relugolix has much less impact on the cardiovascular system. That is a point that must be emphasized in the request for coverage.
Good luck!
Hello, thank you for your reply. May I ask which Part D provider you have? My "insurance is currently paying 100% at this time, however I will be going on Medicare the first of December. Things will change then, and I have a Part D broker working on what supplemental would work best for this med. If your Part D covered it all, I would like to get on that as well.
Thank you for any help, and hoping all is going well with you.
@ MobilityTech: my Part D provider is CVS Caremark Specialty Pharmacy.
Thank you for your reply. Very helpful!I did get on Relugolix. My PSA went from 10 plus down to 1.17 in three weeks. My doctor is amazed. Best of luck to you!
I echo 114411's comments - started Orgovyx in mid-March. First couple of days were tough...it acts quickly...and the usual side effects (muscle loss, hot flashes) set in, but honestly I can't say that I've had any gastrointestinal issues that I could directly correlate with the drug. It starts fast and from what I understand the effects on testosterone suppression end quickly when discontinued. I haven't undergone Lupron treatments so I can't give a good apples-to-apples, but I have had a good experience with it and I've recommended it to a couple of my friends who are fellow survivors.
Thanks for the reply. I've been on Relugolix for nearly a month and it's way better than Lupron for me. Really glad I elected to get on this after this last treatment holiday. Good luck!
Started Orgovyx 4 months ago. No side effects yet. PSA at <.1 for 18 months now. Best wishes.
Thanks for the reply. I did get on Relugolix. In 3 weeks my PSA went from 10 plus, down to 1.17. My doctor is amazed. Side affects are wayyyy less than Luprin. Best of luck to you!
I switched from Firmagon to Relugolix/Orgovyx in February, and it was the best thing I ever did. Those monthly injections were HELL! No change in the low T effects and PSA stayed undetectable, but then both are Antagonist ADT Drugs. Cost needs to be investigated with your insurance as well as the manufacturer.
Thanks for the reply. I have since gone on Orgovyx nearly a month ago. My PSA has gone from 10 plus to 1.17 early last week. My insurance is covering 100%, however I go on Medicare in December. I have a Medicare supplement broker working on what will be best for me, as well as my Doctor has a very experienced person for finding good pricing on meds.I was on Lupron for one three month shot that lasted six months. I then went on a treatment holiday, and after a year, I had the new very sensitive scan done which found a lymph node with cancer in it. Cyber knife got it taken care of. However my PSA only went down one month and then back up.
So now this had been much better than Lupron. I have hot flashes but only about a quarter as bad as with Lupron, and not as many.
Good luck with your journey.
Thanks. If pricing for drug on Medicare Plans is prohibitive...call Myovant directly...they were very helpful with helping me find alternative funding.
Fairly standard advice. Does anyone have any exceptions?
question about going to Mayo
Does anyone else have a fave song for helping with the stress of having advanced PCa?
Anemia - Does anyone have anemia/ low: wbc, rbc, hemoglobin, hemocrit and cobalt? &/or high B12 levels? If so, how do you resolved this?Does anyone have multivitamin/progression data?
