What's your experience with Orgovyx (relugolix)?

Posted by web265 @web265, Jun 7, 2022

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?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

It's great to find a thread specific to Orgovyx users! I've learned a lot already reading through and was initially trying to get a prognosis for my side effects. I started taking O 12 days ago and am feeling much better than expected. I get a number of daily flushes/flashes, but, they range from pleasant (when I am feeling cold) to a light sweat. I decided to take pills each evening after dinner thinking I'd sleep through most all symptoms and that has been the case so far. There are so many variables with different guy's experiences that I can't predict, with any level of accuracy, what will happen to me. However, I now see a more narrow range of possible outcomes.

I didn't see any comments on insurance coverage and net cost of the drug. Clearly, that will vary tremendously with a variety of factors. So far, I'm quite unhappy with the Cigna insurance coverage that I received for the first 30 day supply. I just started Medicare in May after leaving the company plan. I bought Cigna Medicare Extra Part D after asking for a plan with highest premiums and lowest co-pays. A 30 Days supply Coverage was:
Billed: $2,632.44
Plan Paid: $1,266.22
I Paid: $1,366.22 (includes $100 ded. which is now met)
Of course, I'm investigating with Cigna and Orgovyx what is going on and what they can do, if anything. So far, I'm hearing nothing but rejections for assistance. I am astonished when I read on the Orgovyx website:
IF YOU HAVE MEDICARE PART D: orgovyxpricing.com
3 out of 4 ORGOVYX patients paid
$100 or less per month on average*
That sounds like false marketing to me and they can't explain why I'm not 3 out of 4. I'm advised to fill out an application which then gets rejected.

While I likely won't qualify for low income assistance, I paid for Cigna's top plan knowing I might need pricey drugs and expected them to have more coverage. Hence, I'm wondering if anyone has had the same experience and what remedies may exist for a drug that has no generic or alternative other than a different class (agonist vs. antagonist)?

REPLY
@seasuite

It's great to find a thread specific to Orgovyx users! I've learned a lot already reading through and was initially trying to get a prognosis for my side effects. I started taking O 12 days ago and am feeling much better than expected. I get a number of daily flushes/flashes, but, they range from pleasant (when I am feeling cold) to a light sweat. I decided to take pills each evening after dinner thinking I'd sleep through most all symptoms and that has been the case so far. There are so many variables with different guy's experiences that I can't predict, with any level of accuracy, what will happen to me. However, I now see a more narrow range of possible outcomes.

I didn't see any comments on insurance coverage and net cost of the drug. Clearly, that will vary tremendously with a variety of factors. So far, I'm quite unhappy with the Cigna insurance coverage that I received for the first 30 day supply. I just started Medicare in May after leaving the company plan. I bought Cigna Medicare Extra Part D after asking for a plan with highest premiums and lowest co-pays. A 30 Days supply Coverage was:
Billed: $2,632.44
Plan Paid: $1,266.22
I Paid: $1,366.22 (includes $100 ded. which is now met)
Of course, I'm investigating with Cigna and Orgovyx what is going on and what they can do, if anything. So far, I'm hearing nothing but rejections for assistance. I am astonished when I read on the Orgovyx website:
IF YOU HAVE MEDICARE PART D: orgovyxpricing.com
3 out of 4 ORGOVYX patients paid
$100 or less per month on average*
That sounds like false marketing to me and they can't explain why I'm not 3 out of 4. I'm advised to fill out an application which then gets rejected.

While I likely won't qualify for low income assistance, I paid for Cigna's top plan knowing I might need pricey drugs and expected them to have more coverage. Hence, I'm wondering if anyone has had the same experience and what remedies may exist for a drug that has no generic or alternative other than a different class (agonist vs. antagonist)?

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Seasuite:
Orgovyx is covered under Medicare Part D. Prior to PCa, my only Rx meds were Tier 1/2 generics, with no or nominal copys and a rock bottom premium.
Orgovyx was a Tier 5 branded med with a 25% copay: $ 1100 first month, which included deductible; $ 725 / mo for next 3 prescriptions.
When you move to 3rd stage catastrophic coverage, your copay should be reduced significantly.
If cost is an issue, the injectable meds (Lupron/Eligard, etc) should be covered under Medicare Part B at what may be a significantly reduced out of pocket.
I have Original Medicare, together with a Supplement plan, and chose my separate Part D coverage.
Drug plan costs are challenging to understand in a "vacuum" and in advance of actually knowing what meds will be needed.
Hope this is helpful.

REPLY

@michaelcharles Thanks for the comeback and I have to say I'm so impressed with this functional Mayo site, and Mayo in general, that allowed me to easily post a photo. I tried to get a 'video' second opinion from Mayo Urology/Radiology, but, was told I'd need to come to Rochester even for telemedicine.

I'd be happy with 25% copay. As mentioned, mine was 50% and yes, I think that if I continue (I need 4 months min.) it will drop according to the chart I've attached. My guess is that you were initially in 'coverage gap' as the next step is 'Catastrophic Coverage' (AKA you should have bought the pharma stock).

I'm going to write up my experience and send to Stanford Med. so they can bring in their Orgovyx rep. Apparently, they used my income data, however, I didn't provide any directly. Looking at last year makes no sense as I retired this year and went on SS. As a last resort, I usually look up the CEO (Pfizer?) and send an email. Surprisingly, that has worked well for me with several past unrelated escalations, however, I had very strong cases in prior situations.

REPLY
@seasuite

@michaelcharles Thanks for the comeback and I have to say I'm so impressed with this functional Mayo site, and Mayo in general, that allowed me to easily post a photo. I tried to get a 'video' second opinion from Mayo Urology/Radiology, but, was told I'd need to come to Rochester even for telemedicine.

I'd be happy with 25% copay. As mentioned, mine was 50% and yes, I think that if I continue (I need 4 months min.) it will drop according to the chart I've attached. My guess is that you were initially in 'coverage gap' as the next step is 'Catastrophic Coverage' (AKA you should have bought the pharma stock).

I'm going to write up my experience and send to Stanford Med. so they can bring in their Orgovyx rep. Apparently, they used my income data, however, I didn't provide any directly. Looking at last year makes no sense as I retired this year and went on SS. As a last resort, I usually look up the CEO (Pfizer?) and send an email. Surprisingly, that has worked well for me with several past unrelated escalations, however, I had very strong cases in prior situations.

Jump to this post

The file said it's attached, but, I can't see it. In any case, here is the information:
Medicare Pharmacy Coverage Details
How your Pharmacy Part D Drug Plan Works
Your plan has 4 stages. The amount you pay depends on which stage you are in.
1 Deductible
In the deductible stage, you pay 100% for Tier 4 and Tier 5 drugs until you meet your $100.00 deductible. There is no deductible for drugs in other tiers.
Deductible Remaining
$0.00
Met: $100.00
$0.00 to $100.00
You're in Stage 2
2
Initial Coverage
In the initial coverage stage , you and the plan begin to share costs until you spend a combined $4660.00.
Initial Coverage Limit Remaining
$1,964.90
Met: $2,695.10
$0.00 to $4,660.00
3 Coverage Gap
In the coverage gap stage , you and the plan continue to share costs until your out-of-pocket spending reaches $7400.00.
Coverage Gap Limit Remaining
$5,995.52
Met: $1,404.48
$0.00 to $7,400.00
4 Catastrophic Coverage
The plan pays most of the costs for Medicare-covered drugs. The catastrophic coverage stage continues through the end of the calendar year.

REPLY
@seasuite

The file said it's attached, but, I can't see it. In any case, here is the information:
Medicare Pharmacy Coverage Details
How your Pharmacy Part D Drug Plan Works
Your plan has 4 stages. The amount you pay depends on which stage you are in.
1 Deductible
In the deductible stage, you pay 100% for Tier 4 and Tier 5 drugs until you meet your $100.00 deductible. There is no deductible for drugs in other tiers.
Deductible Remaining
$0.00
Met: $100.00
$0.00 to $100.00
You're in Stage 2
2
Initial Coverage
In the initial coverage stage , you and the plan begin to share costs until you spend a combined $4660.00.
Initial Coverage Limit Remaining
$1,964.90
Met: $2,695.10
$0.00 to $4,660.00
3 Coverage Gap
In the coverage gap stage , you and the plan continue to share costs until your out-of-pocket spending reaches $7400.00.
Coverage Gap Limit Remaining
$5,995.52
Met: $1,404.48
$0.00 to $7,400.00
4 Catastrophic Coverage
The plan pays most of the costs for Medicare-covered drugs. The catastrophic coverage stage continues through the end of the calendar year.

Jump to this post

Good luck. You may receive a break in the coverage gap stage; 25% copay, but I am not sure. It did not help me with a 25% copay anyway.

REPLY

Do you take it immediately after or with food? This is important.

REPLY

I started Orgovyx Sept 6 and the restless leg at night is also keeping me awake. I would love to find a solution. My case is a bit more complicated because I also have Parkinsons Disease. I thought PD was the reason for the restless leg at night.

REPLY
@seasuite

The file said it's attached, but, I can't see it. In any case, here is the information:
Medicare Pharmacy Coverage Details
How your Pharmacy Part D Drug Plan Works
Your plan has 4 stages. The amount you pay depends on which stage you are in.
1 Deductible
In the deductible stage, you pay 100% for Tier 4 and Tier 5 drugs until you meet your $100.00 deductible. There is no deductible for drugs in other tiers.
Deductible Remaining
$0.00
Met: $100.00
$0.00 to $100.00
You're in Stage 2
2
Initial Coverage
In the initial coverage stage , you and the plan begin to share costs until you spend a combined $4660.00.
Initial Coverage Limit Remaining
$1,964.90
Met: $2,695.10
$0.00 to $4,660.00
3 Coverage Gap
In the coverage gap stage , you and the plan continue to share costs until your out-of-pocket spending reaches $7400.00.
Coverage Gap Limit Remaining
$5,995.52
Met: $1,404.48
$0.00 to $7,400.00
4 Catastrophic Coverage
The plan pays most of the costs for Medicare-covered drugs. The catastrophic coverage stage continues through the end of the calendar year.

Jump to this post

I have UnitedHealthcare Medicare Advantage through the State of Georgia. I just started Orgovyx in September. So far coverage has been excellent. First month was $79, second month was $82. I am hopeful that it will remain in that range. I was told that the actual cost was approximately $2,700 per month.

REPLY

I’m on Orgivyx 4 1/2 months. Side effects are almost nil. Seems like better experience than my buddies taking Lupron

Financial - I got accepted by Orgivyx financial support program. Turned me down at first because my tax return 2022 reflected my wife and I before we retired. They just pull the numbers from tax records -
I wrote them back and explained that our current income is only social security - and sent documentation.
They called back and accepted me - they are sending it to me no charge til end of 2023. Then I apply again for 2024.

Hope this helps

REPLY
@tjmayo

I’m on Orgivyx 4 1/2 months. Side effects are almost nil. Seems like better experience than my buddies taking Lupron

Financial - I got accepted by Orgivyx financial support program. Turned me down at first because my tax return 2022 reflected my wife and I before we retired. They just pull the numbers from tax records -
I wrote them back and explained that our current income is only social security - and sent documentation.
They called back and accepted me - they are sending it to me no charge til end of 2023. Then I apply again for 2024.

Hope this helps

Jump to this post

Thanks for replies. I'm also going to make one more run at Orgovyx financial support since I'm in that same boat, they used last year's income and now I'm on SS.

For others who may be interested, my medical provider suggested these avenues, in addition to working with Orgovyx:
Contact Cigna to request a “tier exception”, which (if approved) would provide high tier medication at a lower tier price.
Apply for Medicare's Extra Help program
Apply for Medicaid
Apply for foundation assistance via the Prostate Cancer Health Equity Fund"

If all else fail, I'm planning to email the CEO of Pfizer, albert.bourla@pfizer***, since I've had good luck with other escalations.

REPLY
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