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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.
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.
How long were you on ADT?
6 years minus about 22 months (2 different medication holidays)
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.
I have not considered it yet as I’m not suffering from low T symptoms
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?
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.
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
this is great thanks - it’s been a year - I’m up to ~150 now
Good. Would you consider doing TRT now?
I’m going to get a PSMA pet scan and check for any small spots first - perhaps another year. I did a High-T clinical trial back in 2019, which took my T to 1200. It made my cancer worse and I had to do chemo to knock it all back - so I’m easing into this. Going off Lupron is bit of a Russian roulette for me based on past experience. But I feel better now (granted i was feeling like a superhero at 1200). For now 150 and durable remission is perfect
I wish I was asking that question myself!
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.
is the OP gleason 9 or meta?
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.
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 🤷
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
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.
I've had all the symptoms on your list, some more troubling than others.
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.
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.
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.
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.
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
My ADT duration was about 29 months and expired in June 2019
T drops to Undetectable after cessation of Lupron
With good Zytiga response, do I really need Lupron for adjunctive ADT pre-Brachy?
Two or three years of ADT?
Persisting adverse body composition changes 2 years after cessation of ADT for localised PCa.
How many of you are using tE2 as your only form of ADT?
