question for those who have stopped Lupron after many years of ADT

[Chugach]

I have been on Lupron for 8 years with the short-term exception of a high/T clinical trial,( but even during the trial I stayed on Lupron). Anyway I’m undetectable and decided to stop Lupron.

3 months after not getting my shot my T is now a whopping 37.

I am curious to hear from some of you who have stopped Lupron after being on it long-term. I am curious as to any ‘side effects’. I’m experiencing some issues- but I don’t want to influence your comments.

Let me know.

[6357axbz]

I’ve read here that long term ADT destroys one’s body’s ability to produce much T. It’s been true Fl or me.

[janebob99 in reply to 6357axbz]

How long were you on ADT?

[6357axbz in reply to janebob99]

6 years minus about 22 months (2 different medication holidays)

[janebob99 in reply to 6357axbz]

According to the data, your T-recovery may be very long..many years at least.

Have you considered doing T supplementation? Many papers by A. Morgentaler at Harvard Medical School report that this is a safe and effective treatment for men in your situation.

[6357axbz in reply to janebob99]

I have not considered it yet as I’m not suffering from low T symptoms

[janebob99 in reply to 6357axbz]

Great! What is your T level now?

Some side effects of Low-T are not visible, such as osteoporosis / osteopenia, lipid changes, blood pressure, cholesterol, glucose changes, to name a few. Have you checked all of these lately?

[6357axbz in reply to janebob99]

<3

I have checked them all earlier this month. No major red flags

[janebob99 in reply to 6357axbz]

Excellent. You're in good shape.

What's your T-level now?

[6357axbz in reply to janebob99]

<3

[janebob99 in reply to 6357axbz]

Sorry...I thought "<3" was an emoji. Ha !

[Ramp7]

Been on Lupron for over 3.5 years. Have skipped the last 3 month shot and am monitoring while on BAT. After 3 months very low T levels were in place. My MO said it could take several months to witness recovery. If I notice my T not going down during the low T phase of BAT, I shall administer Orogovyx daily.

[janebob99 in reply to Ramp7]

Here's a plot showing the average % T-recovery versus time for different durations of ADT. For an ADT duration = 3.5 years, the average time for men to recover 50% of their baseline testosterone is 70+ months...not "several months".

That's good that you're doing BAT therapy. Keep us posted on your progress.

Bob

T-Recovery vs time

[dhccpa]

I wish I was asking that question myself!

[SteveTheJ]

I paused Lupron after about 4 years (6 months so far). No side effects from stopping; my testosterone went from 7 to 67 and I feel mildly better in terms of the fatigue. Nothing dramatic but I'm grateful.

[Yzinger]

is the OP gleason 9 or meta?

[treedown]

I stopped it after 2 so not sure that falls into your definition. All I daw was the reversal of the side effects and nothing I could cj sider a new side effect. I hope you find what your looking for. Glad your doing so well that your able to stop.

[Lewellen]

After a year and a half on lupron my PSA continued to be undetectable. I decided that if at 2 years it was still undetectable, I would take an ADT vacation. In preparation for the vacation I switched to orgovyx because testosterone recovery is quicker from orgaovyx than lupron.

Once I was off ADT, testosterone rose to 100 within 2 months. Then to 180 at 3 months. (200 is the minimum normal)

From what I understand, had I continued on lupron my testosterone might not have risen significantly for 6 months or longer.

I have no idea of what 8 years of lupron might do to potential testosterone production.

The only other tidbit of information I have is that I did ask my MO if after 2 years of ADT would my testicles even be able to go back into production. He said yes, so that's what I'm working with 🤷

[RWRB in reply to Lewellen]

HiI'm on Lupron, Prednisone, Abiraterone Acetate since February 2023. Oncologist originally wanted me on it for 3 years. My PSA has been undetectable for the last 5 visits, testosterone undetectable for the last 8 visits.

Side effects for me:

Anxiety/ depression

Emotional

Fatigue

Muscle loss

Testicles shrinkage also Penis

Dry orgasm

Memory fog

Have you had any of these. I'm on a PC chat group and some guys have said they were told to use a penis pump and masterbate to keep the blood vessels open and in use.

What is you journey? I'm set to be off all this by February next year.

Oops

Also have high blood pressure and opteopenia that I take calcium citrate with vitamin D and once per week Alendronate tablet.

Thanks Wayne

[Cactus297 in reply to RWRB]

My son age 51 has been on the same three medications since December 2022. I have noticed mood changes and anxiety and I think depression too….also weight gain around the middle and I think fluid retention. I think they’re very difficult medecines to take. I don’t know how he can do it working and everything. His psa has been normal after radiation March 2022. That’s the good part but those meds are certainly difficult ones to take especially for an extended time which unfortunately is necessary.

[Lewellen in reply to RWRB]

I've had all the symptoms on your list, some more troubling than others.

[Lewellen in reply to Lewellen]

Aside from the sexual complications, I'd say it's that general sense of fatigue and weakness that has caused me the most discomfort. It's like I aged 10 years or more suddenly.

I did use the penis pump approach for the first year or so. Did not like it. Then from reading about it here I discovered low dose daily tadalifil.

[Cactus297 in reply to Lewellen]

I have seen fatigue in my son too.

[Lewellen in reply to RWRB]

Sorry, I seem to have goofed up which reply button to push. I hope you can read my reply a little further down the thread 🙄

[CANAMA]

On Lupron for about 2.5 years. I have been off Lupron for about 4.75 years. Since then T recovery high water mark was 97 about 2 years ago and on March 12, 2024 T was 75.

[janebob99 in reply to CANAMA]

You should have recovered your baseline T by this time. What was your original baseline before Lupron, and how old are you?

You should consider doing T supplementation. Many papers by A. Morgentaler at Harvard Medical School support doing this.

[CANAMA in reply to janebob99]

Thanks for your reply Bob. Unfortunately I did not have T tested prior to my diagnosis in December 2016. God willing I will be 75 years old in August 2024. I have been too timid to supplement my T to date. I plan to discuss the subject with my MSK MO this October.

[janebob99 in reply to CANAMA]

I would suggest asking your PCP or GP about T-supplementation. Shouldn't have to wait until October to feel better.

Ask your MO for evidence that supplementing T for your condition is bad.

I'll bet that he doesn't have any evidence.

[janebob99]

Here's a plot showing the average % T-recovery versus time for different durations of ADT. For an ADT duration = 3.5 years, the average time for men to recover 50% of their baseline testosterone is 70+ months...not "several months". I have no idea about T-recovery when the ADT duration is so long...8 years.

Have you considering doing T supplementation? It's been reported as a safe and effective treatment in your situation (see papers by A. Morgentaler at Harvard Medical School).

Bob

[CANAMA in reply to janebob99]

My ADT duration was about 29 months and expired in June 2019

[janebob99 in reply to CANAMA]

Here's a graph of data showing how long it takes for men (on average) to recover 50% of their baseline T. For an ADT duration of 29 months, it should take about 50 months to recover 50% of your baseline.

T-recovery

[CANAMA in reply to janebob99]

Thanks very much.