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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@kujhawk1978

Recovery of testosterone varies in men who are on it. Like anything else, no single factor.

Length of time is one.

Age is another.

As to to ED, penile and testicle shrinkage, have you had your testosterone tested? Some men do not recover from castrate levels while on Lupron.

The hip and shoulder problems, well, I'm 66 and though I'm active, skiing, hiking on the mountains, biking, swimming, there are what I call the aches and pains from normal wart and tear. I always smiled when the scans would say "shows signs of arthritis..."

Attached is my clinical history. You can see I did 18 months of Lupron and T recovered within a year. The penile and testicular shrinkage went away, there is mild ED but daily Cislus helps.

You could discuss testosterone replacement therapy with your medical team, most are reluctant to do so given the traditional thinking that it's fuel for the fire. Still, there are some out there that argue differently.

As to depression, yeah, in some men it is a side affect. It goes away in some after Lupron clears the system, others not. Your medical team should not be accepting them as par for the course! Rather, they should be adding a specialist to your medical team who can help through counseling snd medical intervention if necessary. If they are not willing, consider firing them and find some who do not accept it as par for the course!

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I took Lupron for 25 months. It drained me of practically all my energy, especially in my legs, caused penal shrinkage and killed my body's ability to produce testosterone. I have been off Lupron for 3 years and my testosterone level varies between 10 to 15. I am due to have it tested again in a couple of weeks. I assume I will never recover my energy, penal length or normal testosterone level.

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At this point, you are unfortunately probably correct, you are one of the men who will not recover testosterone after coming off Lupron.

Options are limited, the testosterone replacement therapy is the only one I am familiar with.

The side affects of close to no testosterone are well known by patients snd the medical community.

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I was on Lupron for 6mo. and it took a good 6mo. to come off of it. I started in April and did not see improvements until one year later. Most everything has come back to normal except the pain in my feet & hands sometimes. Everyone is different but getting off that sh.. is tough! Good luck!

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What are the side effects of permanently low testosterone?

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@cdcfbw

I was on Lupron for 6mo. and it took a good 6mo. to come off of it. I started in April and did not see improvements until one year later. Most everything has come back to normal except the pain in my feet & hands sometimes. Everyone is different but getting off that sh.. is tough! Good luck!

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What was your gleason score? Thanks and be well!

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There are many factors and much variation as you might expect given the heterogeneous nature of prostate cancer, our individual health history...One factor is length of time on ADT, some are six months, others are 24-36 months. I was on it 18 months. Last shot, a 90 day shot, was May 18, so that was effective through July. By October T was returning (135). So, around three months. By February, seven months, T had returned 482 which was higher than when I started my third round of treatment in Jan 17. As you might expect, the side affects started to abate within the first 90 days and by 6-12 months, gone.

I believe that a regular exercise program was a factor in my recovery after those 18 months. I can't point to any studies but have seen various comments on the forums about it's role.

Kevin

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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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@chicoman

What was your gleason score? Thanks and be well!

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My Gleason was 3.3 in the beginning and now is 0.05.

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My testosterone is back to 370. Has not helped with ED. I see a pelvic therapist; she helps with the groin pain and urinary frequency. I also see a sex expert. He prescribed Viagra. So far, no results. I need to see my cancer counselor about my depression.

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@kujhawk1978

There are many factors and much variation as you might expect given the heterogeneous nature of prostate cancer, our individual health history...One factor is length of time on ADT, some are six months, others are 24-36 months. I was on it 18 months. Last shot, a 90 day shot, was May 18, so that was effective through July. By October T was returning (135). So, around three months. By February, seven months, T had returned 482 which was higher than when I started my third round of treatment in Jan 17. As you might expect, the side affects started to abate within the first 90 days and by 6-12 months, gone.

I believe that a regular exercise program was a factor in my recovery after those 18 months. I can't point to any studies but have seen various comments on the forums about it's role.

Kevin

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Hi Chris from the UK again.
I was diagnosed with locally advaced PC with Gleeson 10 last Sept.
Been on Lupron pretty much since day 1 and not really had any negative side effects apart from the obvious ones due to lack of T.
I am 61 and before diagnosis was fit and well and very active.
I changed my diet on diagnosis lost over 2 stone and continued with a daily exercise regime.
My prognosis is looking good and having had 2 rounds of chemo and curently half way through 20 rounds of radio, am still hopefull of a positive outcome.
I have read many times on numerous forums and in respected scientific/ medical publications the benefits of taking regular exercise and moving to a healthy diet. Low fat and sugar and more fruit and veg particular cruciferous.
My consultant has confirmed to me on many an occasion that he believes that my daily exercise and diet has contributed significantly to my good response to treatments so much so that he says it should be considered as an important element of the overall treatment plan in their own right.

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