Recovery of testosterone and side effects after stopping ORGOVYX

@jeffmarc

As I understand it, the low testosterone causes the side effects and not the Lupron. This raises the issue of why doctors keep giving Lupron or other ADT to men who have already been chemically castrated by the ADT. Studies show that more than 50% of men will never recover their testosterone levels once treated, yet many men take ADT for many years. My side effects seemed life threatening to me and I had testosterone levels around 200 before treatment. Now 5 months after stopping Lupron I still have serious side effects. Some are getting better while some are getting worse. My PSA is < 0.1 and testosterone < 9 after 5 months.

@pesquallie
It’s not that they won’t get testosterone back at that. It’s that they won’t get it back at the same level it was before.. Yours was very low to start.

My brother was on it six months and it took him almost a year before most of the hot flashes stopped.

Check out this study that compares Orgovyx to Lupron patients testosterone return time.
https://www.sciencedirect.com/science/article/pii/S2588931123002900
One thing that it finds is that people just don’t recover from Lupron very quickly

Overall, 74 of the 137 men in the relugolix cohort recovered to testosterone >280 ng/dl, with a median time to recovery of 86.0 d (95% CI, 65.0–92.0), versus two of the 47 men in the leuprolide cohort, with a median time to recovery of 112.0 d

@jeffmarc Jeff, you seem like you’ve more than done your homework with all the valuable posts you’ve made . I may be repeating a previous comment but I wonder how many men planning on an implant have had normal and satisfying sex with an orgasm before considering surgery. I badly want an implant but after having surgery, radiation, and Lupron 15 months ago I have not been able to feel anything with a mediocre erection from Trimix or Bimix and so no ability to have an orgasm. Until maybe when my testosterone improves I will feel the sensation I use to and then having surgery would be great but not now.

@graybeard46
It’s the ADT and low testosterone that causes the inability to climax. Once your testosterone comes back up, it should start working again,

I have heard from people that have said they never were able to do it after ADT. That seems to be a minority of people that have used ADT.

@jeffmarc hope you’re right , thanks , keep hoping

@tommylee3 If exercises fail, a couple of survivors I've encountered have had surgery: the "sling" procedure or artificial sphincter. Both are very satisfied with the results.

@jime51
The sling does not work well if you’ve had radiation. Just something to be aware of.

The AUS is the best option if you’ve had radiation or think you will have it.

@jeffmarc Jeff, thanks for the clarification! The gentleman I know with a successful sling procedure had a prostatectomy.

Appreciate the feedback on my options for treating SUI. Based on previous posts and doing a little research, I’m leaning towards the AUS. My call with Boston Scientific representative was delayed until next week. I’ll have even more information at that time. Thanks again gentlemen.

Ok...

You asked "Has anyone had diarrhea as a side effect of stopping ADT and how long before Tetosterone returns along with muscle gain etc. etc. thank you.

The first question, no.

The 2nd question, well, it varies.

My experience, albeit a study of one, after triplet and later doublet therapy, my T "recovered" to 400+ in the first six months.

Why? Neither I or my medical team can say answer that question.

I was 61 when I came off triplet therapy, 67 when I came off doublet.

Perhaps as sone of the literature suggests and my medical team doesn't disagree, exercise played a role.

How much, what kind...not sure there is an answer. MY, study of one, most days I go to the gym, 45-60 minutes on the bike, resistance training and swimming.

There are days I ride outside, 35-45 miles.

Our vacations are pretty active, lots of hiking, I do like to ski in the winter.

Then there are the usual domestic ones, walking our dog, yard work, household chores.

Kevin