Lupron Depot: Weakness and instability side effects

Posted by digby2023 @digby2023, Feb 19, 2023

I am interested in any noted side effects of Lupron Depot re walking instability and/or ataxia. I had one 30ml shot of this in late November 2022 and note general weakness and instability I am trying to understand

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1. I had my first shot of Lupron in May, 2022.
2. I had another shot in August, 2022.
3. I then decided to stop it.
4. I was told that my testosterone would return in 6 months.
5. It is now August, 2023.
6. My latest testosterone test says my level is now up to only 119.
7. With such low testosterone and loss of muscle mass, I am no longer able to walk to the store as I had done regularly before I started Lupron.
8. I do not have the confidence to step up on curbs or step down from curbs.
9. I have to hire a caregiver to take me to the post office or doctors' appointments.
10. I am essentially home-bound.
11. I am 86 years old.

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@jimbo12

1. I had my first shot of Lupron in May, 2022.
2. I had another shot in August, 2022.
3. I then decided to stop it.
4. I was told that my testosterone would return in 6 months.
5. It is now August, 2023.
6. My latest testosterone test says my level is now up to only 119.
7. With such low testosterone and loss of muscle mass, I am no longer able to walk to the store as I had done regularly before I started Lupron.
8. I do not have the confidence to step up on curbs or step down from curbs.
9. I have to hire a caregiver to take me to the post office or doctors' appointments.
10. I am essentially home-bound.
11. I am 86 years old.

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Very sorry to hear of your difficulties.
Might you feel comfortable walking a little bit with canes or walking sticks to perhaps maintain the mobility that you still retain?
Have you considered a trial of physical therapy?
Prayers for your recovery and comfort.

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@michaelcharles

Very sorry to hear of your difficulties.
Might you feel comfortable walking a little bit with canes or walking sticks to perhaps maintain the mobility that you still retain?
Have you considered a trial of physical therapy?
Prayers for your recovery and comfort.

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Thank you for your kind words.

1. I do walk around inside the house and the perimeter of our house.
2. I do walk a few yards on the sidewalk in front of our house.
3. I do carefully place the trash bins outside for collection each week.
4. I live in the hills. Before I started Lupron, I regularly walked 3 or 4 miles three times a week to the post office, supermarket, etc.
5. I wouldn't dare try now.
6. I regularly do some resistance exercises, such as climbing the stairs in our house or the stand and sit exercise. And, of course, trying to stand on one foot.
7. I am not interested in formal therapy until I can get my testosterone back in range.
8. I am very depressed that I cannot walk for pleasure, which has been my only hobby for 40 years.

Thanks again for your encouragement.

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Again, best wishes.
Very challenging to stay active, but safe.

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I am 9 weeks out from a 3 month Lupron shot. Hot flashes are bothersome. Fatigue is a real problem also. Is a person supposed to avoid alcohol , as I like to have a few beers a couple times a week. My Urologist didn’t inform me of any side effects of Lupron , at all ?

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@eyesdilate

I am 9 weeks out from a 3 month Lupron shot. Hot flashes are bothersome. Fatigue is a real problem also. Is a person supposed to avoid alcohol , as I like to have a few beers a couple times a week. My Urologist didn’t inform me of any side effects of Lupron , at all ?

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We must have the same Urologist, as mine told me nothing of what to expect re side effects or how to alleviate them to any degree. After a 'honey moon' period with first injection, the hot flashes and loss of energy, plus bone and muscle aches hit me with a vengeance. Thankfully, I had joined Mayo Clinic and another online info group in addition to a local support group from which I learned more than I ever wanted to know (tsk!)
I was supposed to have an 18-month course of treatment, but opted out after one year with my last injection on May 14. All of the above-mentioned side effects remain with some slow and subtle progress being made. My next check-up/blood work will be in November with a current PSA of 0.1.
I can understand why ADT isn't the most sought-after treatment.
My alcohol intake (couple of drinks a week and/or wine with dinner) has not changed.
Good thoughts!

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One more side effect is that my red blood counts are all low and borderline anemic as indicated by my most recent blood draw. I asked about an iron infusion, but was denied, and have started a supplement which can result in constipation problems. My PCP suggested taking it with a sip of orange juice and so far, so good. This happened thanks to the testosterone loss. Always something....

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@eyesdilate

I am 9 weeks out from a 3 month Lupron shot. Hot flashes are bothersome. Fatigue is a real problem also. Is a person supposed to avoid alcohol , as I like to have a few beers a couple times a week. My Urologist didn’t inform me of any side effects of Lupron , at all ?

Jump to this post

I'm out 8.5-months from last Lupron shot after 2-years of shots every 3-months. My strength is returning and I have some body hair returning (not that that's any big deal). But the hot flashes only seem to be getting a little more infrequent - two or three a day rather than every 4 to 5 hours; that with using Paroxetine to slow them down. My excellent OU told me Lupron doesn't have a half-life like other meds but my body just needs to slowly expel it. And that goes slower as we age. I'm 77 so middle-ish "old" I figure.
And I've heard some guys go a year or + to get rid of the side effects. Yikes! I was ready yesterday to be flash free.
Good luck to you and all of us on becoming a 'normal' guy.

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sounds familiar I am 78 and the testoserone is 12.3 which I gather is pretty low. I have my doubts about normal ,maybe there is a ' new normal '. at least that was the last suggestion from my cancer care nurse. It may be wierd but I have been recovering strength , pretty well I really feel quite normal now. There are lots of differant experiences with the lupron net effects. The possabilities that have been my expectations are from six months up to 3 years . It sounds like we in the same position. The biggest issue here is fatique ,,,, still that can be dealt with by a good consistent exersize schedule. That helps a lot, mostly I am aware of it but it is managable. My advice is to concentrate on aerobics. I am a cyclist and it is a natural high for me . The smart move is to mix up the regimen , add some weight bearing things and pick whatever feels the best .I have been doing that all my life and the worst thing for me it to fall behind with activity. It helps me to make a decision and stick with it. Aging is a drag isn't it ?

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I have some fatigue after 2 shots, first a one month, second a 3 month, next one slated for October.
Nurse said to push through exercise even if fatigued. And naps have been helpful for me.
My question is whether these side effects would be minimized if a surgical choice is made to eliminate testosterone? Thanks for thoughts.

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