How long do Lupron side effects last after treatment concludes?

Posted by jbuuck @jonbuuck, May 10, 2021

I've been on Lupron for two years. The treatments have ended. How long do the side effects last? Thanks for any insight you can provide.

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@ken1946

I was on for two years. Nothing has come back yet. I have been off for a year and a half. I am 75. My urologists say I ought to be thinking about stuff other than sex. I had RP first and then 44 photon radiation treatments as well. All made me shorter and contributed to my ED.

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I would look for another urologist. There is a lot of ageism in doctors who assume older guys aren’t interested in sex. Maybe talk to a sexual health doctor too. Just saying to think about other stuff is not an acceptable answer IMO

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Three weeks ago my psa rose again and it is clear that the continuous luprolide was not going to work. I had a PETCTpsma scan which indicated that i still have only three tumors in my pelvic lymph nodes, but that one of them is growing ( although slowly). No indication of the cancer in any organs or bones at this time. I will continue the luprilide every three months and have now added 160mg of Enzalutaide daily. I will return in a month 6 weeks to test my psa, liver and kidneys so see that they are tolerating the medications. Side effects are significant, at times, but so far limited to hot flashes, lower leg pain and increased tiredness. While my daily coffee doesn't appear to be a problem, I enjoy a drink on a friday and saturday night if we go out and that does tend to set off the hot flashes at about 2am. I also tired more easily and will try to increase my excercise more.
Time will tell how my body adjusts, and subsequently how I will need to adjust.

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@sarmajor

I am 73 and pretty much all of the conditions you describe are present except hair loss. PSA has been < .1 since my radiation therapy in 2016-17. My T is as low as my urologist has ever seen but I can still lift my 850 lb motorcycle to an upright position and do all my normal chores around the house and as a volunteer in a state park. I just tire a bit more easily. I can live with that.

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Here's an update to my previous posts if interested. All the best to you.

"Exactly 1 year since 45mg Lupron hormone therapy injection that was followed by 20 radiation sessions. 90 day post treatment PSA test showed no cancer but I was left with several side effects. Decided not to continue Lupron injections, exercised daily and dieted with hope of returning testosterone level to normal from a low reading of < 20.
I am pleased to report one year later that retest results today show testosterone at 396 in a normal range of 240-899. Side effects from original loss of testosterone appear to be slowly subsiding. The worst side effect reported earlier is incontinence ( I prefer to call it "back door plumbing") and is still present. I believe this was caused by the radiation treatment and am hopeful it will normalize soon. "

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@eldorado80

Update:
I decided to get a baseline testosterone reading going forward now that I have decided not to take the 3 (out of 4) additional Lupron Depot therapy injections. The results just out < 20 Total T so have my work cut out for me. Normal is
I have/am experiencing all of the following side effects I’m optimistic that with diet and exercise over time T will return to normal range. Normal is approx +150-800 for a male my age.

In males, lower testosterone levels can lead to:

hair loss
a reduction in muscle tone
more fragile skin
a reduced sex drive
mood disturbances
memory or concentration problems

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I am 73 and pretty much all of the conditions you describe are present except hair loss. PSA has been < .1 since my radiation therapy in 2016-17. My T is as low as my urologist has ever seen but I can still lift my 850 lb motorcycle to an upright position and do all my normal chores around the house and as a volunteer in a state park. I just tire a bit more easily. I can live with that.

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@ecurb

Did the fatigue go away after ADT stoppage. How often is your PSA checked now? Thanks, bruce

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Lots of exercise ..no fatigue.. psa every 6 months

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@mike72

Great comments.. I was on ADT for 2 years and have been off it for 1 year.. still have hot flashes at night.. psa still undetectable ❤️. I am 73 not pleasant but it beats rising PC

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Did the fatigue go away after ADT stoppage. How often is your PSA checked now? Thanks, bruce

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@grandpun

Great questions. Some I know and some not.
Last Lupron was 1/4/24.
Then only a PSA check in early April. Score was "negligible". I love that one.
Next PSA check will be at six month mark in October with only a Prolia shot to prevent bone loss side effect. I don't know what's happening there, good or bad. But I've had no bone problems whatsoever.
I'd also love to see the end of hot flashes but they are still with me even now some 6-months out. I've heard that it may take a year (more?) - but I sure hope not. My Med Oco said the time it takes for your body to clear out the Lupron is longer with greater age. Not a great time for me to be 77.
The fatigue is gone. I think it was linked to episodes of tachycardia - heart rate over 120/minute. Possibly due to Lupron, maybe. Those seem to be gone but I'll get a better report in about 2-weeks.
And hair loss was not a problem for me. My head is patchy bald already and I didn't miss the hair on my arms/legs.
Yeah, the hot flashes linger on. (I do take Paroxetine that reduces them somewhat.) But better than a flare up of PC !!!
Hang in there my friend.
GranPun

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Great comments.. I was on ADT for 2 years and have been off it for 1 year.. still have hot flashes at night.. psa still undetectable ❤️. I am 73 not pleasant but it beats rising PC

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Great questions. Some I know and some not.
Last Lupron was 1/4/24.
Then only a PSA check in early April. Score was "negligible". I love that one.
Next PSA check will be at six month mark in October with only a Prolia shot to prevent bone loss side effect. I don't know what's happening there, good or bad. But I've had no bone problems whatsoever.
I'd also love to see the end of hot flashes but they are still with me even now some 6-months out. I've heard that it may take a year (more?) - but I sure hope not. My Med Oco said the time it takes for your body to clear out the Lupron is longer with greater age. Not a great time for me to be 77.
The fatigue is gone. I think it was linked to episodes of tachycardia - heart rate over 120/minute. Possibly due to Lupron, maybe. Those seem to be gone but I'll get a better report in about 2-weeks.
And hair loss was not a problem for me. My head is patchy bald already and I didn't miss the hair on my arms/legs.
Yeah, the hot flashes linger on. (I do take Paroxetine that reduces them somewhat.) But better than a flare up of PC !!!
Hang in there my friend.
GranPun

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@grandpun

"Jbuuck" and all,
At 77 years old I had my last Lupron shot 1/4/24.
My sides were: hot flashes - still but maybe a bit less frequent. Hair loss on my body - but arm hairs are re-growing, muscle mass & strength way down - with no improvement yet, fragile skin - no improvement but that could be just age, the RARP took my sex drive, mood and concentration remained good and I'm better than ever now.

Like you, I'm mostly anxious to get rid of the hot flashes and regain muscle.
Best of luck to you and all of us with these annoyances.
But I'm doing all I can to enjoy life: 2 grown sons, 4 wonderful grand kids, and a Lady Friend who likes concerts, social gatherings, and fast cars 🙂
All the best to you and all our Brothers!
- GranPun

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Hi there, grandpa, tell me what your PSA is since your off Lupron now. Is the PC still dormant...I m coming up on stopping ZYTIGA , (same stuff) in November. I m wondering how long before I get rid of hot flashes and hair loss and fatigue? Its getting old as you know. Bruce

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recovery from the meds is very gradual. I was on lupron and Erleada for a year and I have been off of it for 18 months. My testosterone has recovered from 9 to presently 125. There was very little body hair but recently it is coming back but less than pre meds. My mood swings and sleep disorder probably took 10 months, and muscle is not back, but then I am 77. Nevertheless, the meds and the recovery were manageable and I am glad to still be kicking.

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