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Potential Lupron side effects

RA11 profile image
RA11
12 Replies

Had prostatectomy six years ago, need treatment.. Wondering if anyone has experience with Lupron hormone therapy and potential side effects.

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RA11 profile image
RA11
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12 Replies
conbio profile image
conbio

Was on Lupron for 18 months along with EBRT and Brachy. Occasional hot flashes - a bit annoying. Reduced hair on legs and arms. Libido was in the toilet. Gained about 5 lbs. Because you have no T, you should do weight training to reduce the amount of muscle mass and keep weight under control. All in all I managed well. T came back to normal about 4 months after treatment.

Nusch profile image
Nusch

I assume most of you here have experience with Lupron. For me, it was manageable for three years. The main side effect, aside from the usual ones, was muscle loss. To counter this, it’s essential to begin weight training along with some running, walking, or similar cardiovascular exercise right away. Regaining lost muscle mass is tough—doable, but much more challenging. That’s why it’s best to start while you still have your muscle strength.

MarkS profile image
MarkS

I echo the above comments. I'm mid way through a 2 year course of Lupron. I go to an exercise class (aerobics and weight lifting) 5 times a week as well as walking with the dog. I find that really helpful as I haven't had some of the usual SEs such as hot flushes or weight gain (I have put on 2Kg but that was deliberate). My muscle mass is marginally reduced though that has improved recently and I'm back to the same weights before this malarkey. I get slight brain fog (e.g. forgetting someone's name). Perhaps slightly more tetchy. But my muscles, particularly my thigh, do ache from the exercise. The lack of testosterone makes repairing the microtears from exercise more difficult. But the exercise does keep me happy and positive.

Doseydoe profile image
Doseydoe

For me the main one is the lack of libido. Everything else is manageable. I hate that my sex life has gone. Little interest and no erections. I hate it. I was on Eligard for two years and thats the reality. It did the trick with lowering my psa but as it states on the packet, it lowers your testosterone. So I took a vacation for 18 months and my testosterone rose and so did my libido and so did my erections. Happy days. But in 18 months my psa increased and so did my cancer. I went from 3 metastases to 15. So now I'm back to where I started but worse. So, do I go off Eligard and have sex again or do I stay on it and live a miserable life with no sex. Live or live without sex. A shitty choice to say the the least. DD 😎

janebob99 profile image
janebob99

You can take estrogen patches in lieu of Lupron, and get the same level of PSA control and metastasis-free survival probability (PATCH Phase-III trial), without having hot flashes or osteoporosis. Email me at janebob99@lobo.net, if you would like some references to give to your doctor(s).

dhccpa profile image
dhccpa

Yes, six years on Lupron. I was diagnosed as metastatic, so no RP.

My side effects other than loss of erections (even those occur) have been minimal. Low energy, but exercise and making yourself just get up and do it help tremendously. Others have hot flashes, mood swings, etc.

I do worry about long term bone and muscle issues.

Sandy752 profile image
Sandy752

Been on Lupron (every 4 months) with no vacations for 11 years after radiation failed to cure me. Side effects are as the other folks listed. Worst for me now(age 79) is fatigue but I do walk a lot and do light weights. I have maintained my weight but lost a lot of muscle tone. Good news is that it has kept cancer in check. Current PSA 0.52.

Teddski profile image
Teddski

If you have any heart problems, stay far away from ADT treatments or Lupron and Orgovyx!

I have had heart problems and both medications slowed down my heat beat. After 12 months my heart was only pumping blood at 43 percent instead of 95 percent. My cardiologist told me heart failure is 41 percent. I could not walk up stairs without pulling my self up each stair with the handrail. The oxegen blood just was not reaching my lower legs and feet.

cancerfox profile image
cancerfox

Don't forget joint stiffness, loss of energy, and genital shrinkage. Welcome to the party! 🦊

PSAed profile image
PSAed

I did 2 years on Lupron, others have collectively listed the side effects, no point me repeating them. For sure it was a difficult time for me on Lupron ....to put it mildly.....but it was necessary. Do not dismiss Lupron treatment, bad and all as it is,it could save your life. Best wishes.

Mgtd profile image
Mgtd

The key to overcoming side effects for me was exercise - resistance and aerobics and portion control. If you do not do those things you may find that the SEs are bad. Wish you luck! You have control. It is that simple!

stealthrider profile image
stealthrider

Here are my symptoms 17 months in on 3 month Eligard doses after non-nerve sparing RALP and salvage radiation.

- Weight gain, increased BMI, I have gained about 20 pounds

- Loss of strength and muscle mass, I can tell strength by my usual exercises and muscle mass by my fancy scales.

- Muscle and joint ache

- Fatigue, loss of stamina

- Prolonged Qt, ~7% as seen on EKG, can't tell other than max heart rate might be impacted.

- Occasional premature atrial contractions, cardiologist not concerned but they are unsettling. You can feel them in your throat

- Loss of body hair

- Zero libido, no erections caused by the non-nerve sparing RALP.

- Genital shrinkage beyond RALP, look like a small child

- Increased A1C, borderline diabetic, started metformin, could be associated with the weight gain.

- Hot flashes, I tell myself this is how I know the ADT is working, for the last couple three month cycles, the hot flashes went away a couple weeks towards the end of the 3 month period. At end of period my testosterone is 5-7 instead of undetectable. I have had T tests on month 1 and 2 and T is undetectable.

- Bone loss? Not clear yet. Had osteopenia going in, next DEXA in 2025

- Recovery/Healing more difficult - from exercise and surgery. I just had second hip replaced and it seems like taking longer to recover than first hip prior to PC journey.

- My blood counts are still whacked after radiation.

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