Starting Orgovyx - how long for side effects to occur?

Posted by daveinflorida @daveinflorida, Feb 17 11:02am

I've been taking Orgovyx for about 3 weeks and so far have zero side effects: no hot flashes, no fatigue or tiredness, no weight gain, no ED, nothing. I'm not complaining, but I'm on pins and needles waiting for stuff to start.

For background, I am in good shape and very active, I've been running for years and run 4-5 days a week, 30 - 35 miles, and also resistance train 2-3 days/week. I have no idea if that's what's doing it, but I'd be doing it anyway.

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I'm 72, and my testosterone was 454 before one year of Orgovyx. During that time, testosterone quickly dropped to less than 6 -- and stayed there.

2 months after stopping Orgovyx, my testosterone recovered to 450!

And I definitely felt MUCH better. More energy, hot flashes gone, etc. Felt like my old self.

Of course, not everyone will respond as I did. And it surprised my Oncologist, who predicted my T recovery in the 200's.

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Profile picture for pcrich @pcrich

I recently switched to Orgovyx after being on Lupron for 7 months. I experienced all the side effects on Lupron almost immediately: (loss of libido, ED, muscle loss, fatigue, hot flashes, 50% genital shrinkage since start of treatment, loss of body hair, skin irritations, bone loss, and higher emotional sensitivity). I'm in my second month of Orgovyx and do not see any real change in side effects. I agree we are all different in our fricken PCa and react differently. I switched to Orgovyx as it is to have a quicker T recovery period once Tx ends and lower CV events.
Everyone should get baseline measures at least for PSA, T, and bone density. I didn't get them until I advocated for them. PSA was 9.52 (3 months prior to Tx) and was reduced to 0.09 after 4 months on Lupron (pretty good). No baseline T or DXA taken. Finally got a T level 5 months later and it was 16 NS/dl - had no baseline T prior other than 10 years ago when my T was close to 1,000. Had a DXA scan a couple of months ago and significant deterioration detected. Will soon start an injection to improve bones. So hopefully with more consistent testing, Orgovyx will do me good.
I have a new oncologist now and he agrees we should be pro-actively monitoring my health.

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@pcrich
Had radical protatectomy surgery a year ago after having a PSA of 9.3 and Gleason score of 3+5. After surgery my PSA was .12 and 9 months later it went to .37 so started treatment of Orgovyx and proton radiation. My Dexa showed some loss and my T level was 523. I am 69 and in good health. I was on Orgovyx for 3 months before radiation started. I had fatigue before starting and it has gotten a little worst with the Orgovyx. I have been on proton radiation for 24 treatments with a total of 40. My last blood work showed my T at 11. Drs said they wanted it below 50, so Orgovyx is doing good. My PSA also dropped to .02 so that is doing good too. The fatigue has gotten worst with both drug and radiation. My calcium levels have actually gotten better. Gone from and 8.6 to 9.2 I am doing a Citrical supplement 600 mg and vitamin D in the morning and a calcium hydroxyapatite supplement 600 mg (100% bioavailability). I am also doing 20 grams of Collagen to help support bone structure.

Some of my additional issues are emotional. I am short tempered when I shouldn’t be. I have had some slight issues with dizziness and shortness of breath when I over exert myself. Overall, I feel pretty good and know this is temporary. Jeff

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Orgovyx can cause the fatigue and mood issues you are having. One really important thing is to exercise. Try to walk at least a couple miles a day, If you can run, that’s even better. Because your testosterone is so low, you will find that you start to get belly fat. There’s many other side effects that can happen as a result of low testosterone.

If you can run and build up your stamina the Mood issues and the shortness of breath Reduce for almost everybody. I know it sounds like it would be just the opposite, but that’s the thing about low testosterone. If you really push it a little bit, you can beat it. I’ve been on ADT for almost 9 years, My testosterone has been below five for most of it. I don’t have any fatigue, but I run a mile twice a day and go to the gym three times a week. The other thing low testosterone does is weaken your muscles considerably, that’s why going to the gym is almost essential. Weightlifting can offset the deterioration of your muscles.

You have a pretty high Gleason score, They may want you to stay on Orgovyx (ADT) For 18 months.

I had a prostatectomy and then 3.5 years later My PSA started rising again and they gave me 7+ weeks of radiation. 2 1/2 years after that, my PSA started rising again, and I went on Lupron, Which works the same as Orgovyx To reduce testosterone.

A lot of people in this group have had the same experience.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. I now use an Embrlabs.com wave 2 device To control, hot flashes, and night sweats.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, many people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people do gain weight, so be careful about what you eat. Weigh yourself every day.

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