Relugolix / Orgovyx: Anyone having... - Advanced Prostate...

Advanced Prostate Cancer

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Relugolix / Orgovyx

Cooolone profile image
20 Replies

Anyone having issue with obtaining Relugolix? Not the script/prescription by your oncologist, but after that...

How did you get it? Local pharmacy? Or is it something else, direct drop ship from manufacturer of drug?

I'm having difficulty... My MO has prescribed it and for the last week have been getting bumped around and not sure of it's my insurance that the issue because they haven't denied it, supposedly, or if it's another issue all together. I have a specialty pharmacy in town that recieved the script and they informed me this morning they cannot get it. Even they said that is weird...

So I figured to inquire here as this is something new I'm coming across!

Thanks for your input and assistance!

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Cooolone profile image
Cooolone
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20 Replies
Tall_Allen profile image
Tall_Allen

Here's a list of distributors:

orgovyxhcp.com/support/#dis...

Cooolone profile image
Cooolone in reply to Tall_Allen

Thank you for this TA!

I'm having a huge problem sourcing this... Not sure if it's my insurance balking ($), but we shall see.

Much appreciated!

GeorgeGlass profile image
GeorgeGlass in reply to Cooolone

You can try calling McKesson - they call me all the time bugging me. My doctor's office got it for me. I'm pretty sure it has changed my stool to hard nuggets, which I've never had before in my life. We're you already taking firmagon? If so, did that affect your stool? I'm having a lot of heart palpitations starting a month ago but I think that is more likely from the covid vaccine, but could be from Orgovyx I suppose.

joeguy profile image
joeguy in reply to GeorgeGlass

I was having all sorts of irregular heartbeats and skipped beats during 2 years of Firmagon/Eligard. I am now on mono-therapy with Nubeqa, and no heart issues so far. I suspect all the chemical castration type drugs have a tendency to create heart issues.

GeorgeGlass profile image
GeorgeGlass in reply to joeguy

Mono therapy. So no adt? Are you still castration sensitive?

joeguy profile image
joeguy in reply to GeorgeGlass

No, the castration drugs like Firmagon have little to no effect on my cancer now...... anti androgens like xtandi and Nubeqa are still working well

GeorgeGlass profile image
GeorgeGlass in reply to joeguy

interesting, thats good that you could stop ADT. Nubeqa sounds like the least toxic of the AR level 2 drugs. How long have you been taking nubeqa?

joeguy profile image
joeguy in reply to GeorgeGlass

Ive been on the Nubeqa about a month now. Stopping the ADT drugs goes against the "standard of care", but given the side effects I was experiencing, I believe it was the correct decision. I feel like Nubeqa may be the least toxic, and possibly best new anti-androgen out there.

GeorgeGlass profile image
GeorgeGlass in reply to joeguy

good luck and keep us informed. I might want to add it before too long.

cesces profile image
cesces

Goodrx lists it's price, after discount, as over $2,000 for 30 tablets.

cesces profile image
cesces

"“Not only was (Orgovyx) better tolerated versus an injection, but it achieved the lowering of the testosterone — and in a more superior way,” Shore explained. “And it was clearly more convenient. But to me, that's not even the most important thing.”

"Treatment with Orgovyx, noted Shore, was associated with a 54% decrease in any kind of significant cardiovascular event compared with leuprolide."

The problem appears to be that it was just approved a few months ago.

It appears to be a non-injectable pill substitute for lupron. Appears that it is a bit easier on the cardiovascular system.

As an injectable lupron is basically free under most medical plans. As a pill this drug is going to be painfully expensive under most medical plans.

You may want to talk to the doc about switching to lupron. At least until they get their distribution/manufacturing problems sorted out.

GeorgeGlass profile image
GeorgeGlass in reply to cesces

I see dr shore. He doesn’t know any gut impact or stool effects. I think my new heart palpitations are likely to be from the second Covid vaccine because my nerve problems and palpitations started two days after the shot. It’s costing me $60 a month Co pay. Another guy on here is paying $50. Not sure what insurance companies are accepting and which aren’t.

Cooolone profile image
Cooolone

Thank you for the posts... I know what it is, the benefit, what's & why's! My MO has written my prescription, it's sourcing it I was having an issue with.

I think I have it worked out now, as one of the Specialty Pharmacy's listed is used by MSKCC and is also one my insurance uses as well.

So thank you very much TA!

Hats off to ya'

And for those who may be unaware, and it's listed on the site TA provided. The manufacturer is providing a month free for first time users, so if you're interested don't forget to get the free $!

:)

I'm already on Lupron and at the end of my cycle, and it's been a shit show for a week back and forth between pharmacies and my insurance really trying to figure it out. All related in my thinking to the fact that it's a new drug and of course expensive so insurance I'm sure isn't entirely motivated!

Again, it's all good, if they didn't get it worked out this week I was back on an injection until next cycle.

I'll let ya all know how it works out, again, thank you all!

Best Regards

Exrunner profile image
Exrunner

Here are the only two pharmacies that I believe are currently handling Orgovyx.Biologics 800 850-4306

US BioServices 877 757-0667

I got mine from Biologics...very helpful and efficient.

Explorer08 profile image
Explorer08

I had a bit of a bumpy ride trying to get Orgovyx but finally succeeded through my local University of Colorado health system - - their specialty pharmacy group. My refills are delivered to my home. My co-pay is $75.00/month which seems to be fairly standard for specialty pharmacy medications based on our prior experiences. I had three insurance denials but my MO wrote a rebuttal detailing my pre-existing heart issues and that did the trick - - given that Orgovyx statistically has lower impact on heart issues than the agonists.

What I do NOT understand is the inconsistency in the insurance approval process. My wife gets a med on a monthly basis that retails for close to $10,000 per month and insurance readily approved it without hassles. Orgovyx is 1/3 that cost but it took some doing to get it approved. Insurance is one of those great mysteries of life - - something out of the X-Files.

Brucewilli profile image
Brucewilli

I started Orgovyx on 3/31 - so far I’ve experienced the standard side effects - mild fatigue, hot flashes (quite a few), libido, have to fight to maintain muscle tone. Myovant /McKesson offers 2 months free and an additional 4 months if necessary to navigate the insurance approval circus. My insurance has yet to approve it but I really hope they do. I haven’t experienced any palpable cardio issues yet but I do a minimum of 4 hours of heavy cardio a week so that may work to preclude that particular symptom. Good luck!!!

Stevana profile image
Stevana

Coolone, see my reply below to a similar post from a few days ago. You should call the Orgovyx help line. They can guide you through the process.

orgovyx.com/

To add my experience with getting approval for Orgovyx: I too am on Medicare but do not have Part D plan, so I receive no drug coverage under Medicare. My supplemental insurer is BCBS. I was able to get coverage for this drug thru them but not without some effort. You must first submit a request for pre-authorization (PA) signed by your doctor. The folks at Orgovyx will help you with this. Once the the PA is denied you have to file an appeal (again, Orgovyx folks will do this for you). As a result you should receive approval for a monthly script good for one year, at which time you repeat the process. Mine was approved fairly quickly with a requirement of a $10 copay per 30 day supply thru Orgovyx's premium supplement program. While you’re awaiting approval Orgovyx will give you 2 month of the drug for free. I received my long-term script approval before I ran out of my first 30 day supply from Orgovyx. It’s a cumbersome process but well worth it to give up the monthly, painful shots from Firmagon or Lupron. For me the side effect are no different except that Orgovyx offers a lower risk factor for CVD. Hope this helps.

cesanon profile image
cesanon in reply to Stevana

Stevana

Dumb question.

If you do not have a Part D plan under medicare, how are you able to have a supplemental drug plan from BC/BS?

I thought having Part D is a prerequisite to getting a supplemental plan?

Stevana profile image
Stevana in reply to cesanon

I’m a retired fed so I continued my work health insurance into retirement. Medicare is my primary and BCBS is secondary and covers my prescription drugs. So BCBS approved my request for Orgovyx at $110 per month, but after after a filing a pre-authorization that was denied and an then an appeal, it was approved at a lower rate. I don’t know what rate is was since I had applied for Orgovyx's copay assistant program and the final copay was $10 per 30 day supply.

What little I know about Medicare, you can choose Part D for drug coverage at an additional premium above your Part B coverage that comes out of your SS check. Or you can elect Medicare Advantage which is offered by many ins

Stevana profile image
Stevana in reply to Stevana

insurance providers. They are private providers who contract with the federal government to provide HMO style coverage that includes both Parts B & D coverage in exchange for your monthly Medicare premium. However, to answer your question I don’t believe you have to have Part D Medicare coverage in order to buy a private supplemental policy. Most people buy a supplemental policy specifically for drug coverage and to cover the 20% that Medicare doesn’t pay. If I were you, I’d call the Orgovyx people and ask what assistance they will offer. I believe they have a plan that covers people who have no drug coverage. Hope this helps. Good luck.

orgovyx.com/

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