I can't find long term side effects of Lupron anywhere on the internet.
My oncologist said there wasn't much data out there.
I have arthritis in about every joint and still have bone and muscle pain and weight gain. Last checked my testosterone levels were 238.
He is reluctant to try hormone replacement therapy because of the prostate cancer.
PSA Is 0.08 now, but at least I'm back to work. I've been back at work for 2 years now. I drive a truck, but there was no way I could do that while on Lupron.
Thanks for any information!
Dale
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Dalewhiplash
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Long term side effects include weight gain, osteoporosis in bones that can be helped with various agents, zometa , denosumab ect. adequate vit d and calcium. After a while it becomes the new normal, did I say lack of libido, after 30 years my wife considered that time off for good behavior . On the upside you get to live , enjoy grandkids, enjoy family ect. Not sure why you could not drive a truck. I fished alone in the ocean commercially for 8 years on hormone deprivation therapy. And had no problem driving. Good thing you may not need it now with such a low psa, but if you should need it, it is not that bad. I too would be reluctant to try trt with active prostate cancer, but there are clinical trials now with that very thing.
I was taking Vicodin for pain, that alone prohibits me from driving a truck.
My memory was so bad, that I forgot to pay my COBRA and they dropped me. My HR gal was able to help me get it back, tho the $1800 a month insurance was high, I was getting $2400 for long term disability. Tho truck drivers are considered unskilled labor, we are subject to the same drug testing as airline pilots.
Anyway, I went to my pcp and told her about growing breasts and the tenderness of them. Her response was "welcome to our world"....kinda pissed me off..
I have arthritis so bad in my right elbow, that I have limited mobility there, and the orthopedic Doc wants to fuse it or replace it. Either way, I can't drive a truck anymore, so I'm fighting that.
My latest blood work is showing kidney function starting to decline. Not major now, but watching.
I'm taking shots for the "whoopie".... That helps.
Just was wondering if anyone else has been off Lupron a while but still suffer.
What are you taking for arthritis? I've been on Celebrex (now celecoxib) for a very long time and it's worked quite well. My joint pain stopped after coming off Lupron and bicalutamide.
Hi Dale. I saw your comments on this topic and wanted to ask you a question, if you don’t mind. I hope you’re feeling better, or as well as can be expected, from the long-term side effects from Lupron that you have experienced.
My husband has prostate cancer, and has been on Lupron for eight months. He has one more month to go with the injections, and then, hopefully, can get off of it, at least for a good amount of time. In terms of the pc, the Lupron seems to have totally shrunk, or gotten rid of, the one small lymph gland tumor he had, so the Lupron is doing it’s job well in that regard.
His main side effects from Lupron have been crushing exhaustion and fatigue, memory loss, weight gain, and no libido. My question to you is this: You said in your comment that you were taking shots for the “Whoopie,” and that they help. If you don’t mind telling me, could you please tell me what kind of shots? Are you talking about subdermal shots (underneath the skin in the arm or buttocks), or are talking about shots given directly into the penis? I’ve heard of the ones given into the penis. I’m concerned because I know my husband will need help in that area if his libido continues to be so low. I’m also concerned about all the other Lupron side effects that could possibly last forever, of course!! This is the only question I have that obviously involves me too. My husband is also really concerned about it.
If this is too private an issue to answer here, then feel free to send me an email at ksjazzcat@yahoo.com. I’d appreciate any answers you can give me, and thank you in advance if you do choose to respond to me. Best regards and good luck to you.
PS- I’d also very much appreciate anyone else on this site who sees this comment, and who could give me information on the topic I asked about. Thank you so much.
I'm totally fine with replying here, and I have good news!
Lupron is a chemical castration. It stops the body from making testosterone. If you look at it as the way it was put to me. Testosterone is to the male body as like gas, oil, battery, tires and doors, is to a car. It's everything. It took some time for my wife to understand, it wasn't her. I did everything I could for her b7t she still missed the penetration. I tried the pills but they didn't work. I went to a urologist and was shown where to inject myself in the penis, which is on the side of the shaft but careful not to go thru a vein.
That said, even after lupron, my testosterone was low but coming up, so I started looking at and doing things that used to turn me on, and with a little help, actually could have an orgasm while completely limp. A sex therapist told me this, and she was right! Also, tell him, if you don't use it, you loose it, so keep trying and use a pump can help keep blood flowing where it needs to but forget about the torture rings! That can do damage. For me, I had radiation to the prostate and seminal vesicals along with lymph nodes, so during an orgasm, nothing comes out.
Don't put pressure on each other also. I was more frustrated than my wife was.
I have been on Lupron for almost 9 years. At about 3 months i had trouble hugging my wife let alone sex. But after awhile i became interested and used the pump for a little while. I swear those rings made me shrink up quick. At any rate my wife went to fla for 6 months and when she came back the pump wouldnt do anything. Then the shots, nothing. Thats when i looked into the implant. Ye ha it works! The only problem is it wont bring back any size lost. Still better than nothing. My insurance covered it and i would advise anyone to look into it before you shrink up.
Dale...I have been of Lupron shots about 6 months after being on them for over a year of 3 month injections after a RP and while on before/during/after RADition therapy... Lupron is the worst part of the whole experience....I am still getting side affects from the Lupron that are debilitating....though they are waves of whatever the side effect is insted of feeling misrable 24/7.....yes pains everywher that is the worst and bad stomach problems...No doctors know....ny doc how was giving me Lupron and I say doc in quotes wanted me on it for life....even thiugh the radiation might have got what the surgery did not....so after a vist to my radiologist who seemed confident I was Cancer free..I canceled the LIFER and have been cancer free since...Blood work every 2 months........However that freakin Lupron still rises its ugly little head...I hope it gets better.....No one knows ...when I asked the lifer why more meds he said its the most cautios way......your an experiment,...Iswear he said I am an experiment..because I will be data in 20 years.....Great I don,t mind....My point is always check on what your doctor is treating you with .....get second opinions....use the internet....you will find almost anything you need to know here....so thats the truth blaaaaaaaaaa....Peace out there people......have a great day whenever your reading this and always ask me question if you want...I am a open book.....Peace....Love.....LIVE!!!!!!!!!
We’re walking the same dog per-say, I’m just a few steps behind you!! I fired my Dr for insisting that I stay on Eligard (same as Lupron) for life!! My oncologist spelled out a different, 18 month plan and my new urologist concurs!! Final 3 month injection, 3 months ago (today).
Eligard kicked my a$$, kicked me in the head and then kicked my a$$ again!!!
Hoping to see the SE’s subside soon so just really currious as to your line “ raises it ugly little head”! Also wondering how long it took you before they were gone long enough to be considered “raising........ from normal!!
Anything you can offer (good or bad) would be helpful to me!!!
Lupron has been around for decades, so there are mounds of evidence about its effects, good and bad. OTOH, if your oncologist wasn't smart enough to prevent your breast growth and pain, maybe she doesn't read much.
GRRRRRRR!
Your low T is teaching your remaining PC cells to become castrate resistant, which is the terminal phase of PC tumor evolution.
Both of those are good. Most oncologists refer us to our PCPs for SEs even during treatment, and gynecomastia (enlargement) and mastalgia (pain) are normally permanent.
I've been on Eligard for 2 1/2 years. The worst se for me have been fatigue and memory loss. I need more sleep than b4 and have to find my phone by accident if I wander around a lot. And no libido. Not much pain except muscle ache when starting slightly more things than sitting.
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