What's your experience with Orgovyx (relugolix)?
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?
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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.
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.
@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.
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.
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)?
Kevin:
Thank you.
I am now 10 weeks post ADT Orgovyx, and the last week or so I have felt my walking pace picking up a bit. Other SEs abating also.
Will not be testing T or PSA until 6 mos post radiation in November. 🤞
Sounds as if you had a relatively quick T recovery after 18 mos of ADT, so good for you and good to hear.
Best, Michael
I did 18 months of ADT starting in Jan 17, last 90 day shot was May 18. By October, T was 135, by February it was 400+. As T recovered, SEs, hot flashes, muscle and joint stiffness, fatigue and genitalia shrinkage disappeared.
Kevin
Good results from Orgovyx so far. Side effects not as bad as Lupron injections. 2nd time using after a 1 month reduction in PSA from 17 to 6. Unfortunately PSA went back to 15 last month and my doctor is going for 3 months on Orgovyx this time around. Side effects are hot flashes, insomnia, depression and muscle loss the first time. This time getting more side effects 3 weeks in. Tiredness, joint aches and some diarrhea unfortunately this time. However, no muscle weight loss yet this time. Will update more later. Hope for all of us.
I hope you have found more information on calcium by now, but in case you haven’t:
My husband is on calcium citrate which does not require much stomach acid to absorb. (He also takes Pepcid)
He was already taking 400 mg of magnesium oxide prior to ADT (degarelix). Leg cramps at night began after starting calcium supplements, an additional 400 mg of magnesium oxide was okayed by his cardiologist and the leg cramps stopped.
Building bone requires more than calcium and vitamin D.
If you haven’t had your baseline DEXA you should get one. I wish you well in your fight against PCa.
I'm just one week in following SBRT. Continuing my daily workouts. So far, just a little fatigue and the "wooziness" or slight "fog" others have reported.