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What's your experience with Orgovyx (relugolix)?
Prostate Cancer | Last Active: 6 days ago | Replies (312)Comment receiving replies
I noticed most input is for people fairly new to orgovyx.
I have completed 18 months of a 24 month course.
Immediately, no energy, no libido.
Within two weeks, intense hot flashes.
Within a month brain fog and memory lapses.
Hot flashes stopped after about nine months. Learned to cope with minimal energy. No libido.
Brain fog cleared over time. Memory lapses increasing.
Long term issues:
serious loss of bone density
very low white and red cell counts
liver numbers on blood test very bad
greatly increased A1C numbers despite very low carb almost no sugar diet.
Development of painful breast tissue.
Beats bone cancer I suppose but the side effects are rather damaging.
PSA down from 21.5 to 0.3
Replies to "I noticed most input is for people fairly new to orgovyx. I have completed 18 months..."
@kingnimshi, how are you and your team managing the longterm issues?
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@kingnimshi
You definitely have had it worse than a lot of people.
I was on Lupron for 5 years and Orgovyx for almost 3.
For 2 1/2 years on Lupron I was undetectable, Then I became castrate resistant And I had to go on an ARPI.
My A1c has never been a problem. I was 5.5 in the last test I get one every three months. I eat a small piece of cake or cookies every day, and I do watch my carbs.
My red blood cell counts are low as is my hemoglobin but my white blood cell counts are normal.
My liver and kidney numbers have always been real good.
I’ve been on drugs to keep my bone density up for the last seven years. That can be real important to do. Taking calcium twice a day and vitamin D also helps.
Never had pain in breast tissue.
I had really bad hot flashes for a few years, They finally have become mild with Orgovyx.
My PSA has been undetectable for the last 28 months. I was on Zytiga for 2 1/2 years and I was only undetectable one month but I am now on Darolutamide For almost 3 years and that’s kept my PSA undetectable.
I’ve never had any fatigue from these drugs, Definitely No libido however.
The brain fog is a common problem, but I am 78 now and that seems to be a little bit normal at this age.
There’s a wide variety of side effects people have from these drugs. Not everyone has all the side effects.