Lupron: Anyone have muscle weakness and severe leg pain?

I don't know if my experience is a "one off" or not. When that pain began in my left leg, it was really bad.

What if you are experiencing the same thing, but on both sides?

Have you talked to your oncologist? I'm proof that serious side effects can happen with the injections. However, it's also possible it's coincident with another problem.

You should see a doc. The scary reason? Years ago, before PSA, it was not infrequent that the first sign of prostate cancer was a collapse of a vertebrate due to prostate cancer localized to the spine. Paralysis was frequently the result. This is particularly the case in Europe where they didn't even treat prostate cancer for the longest time.

Many thanks for your post. I am 60 years old and at 15 months on Lupron. My legs collapsed on me golfing about 4 weeks ago, which was 1 week before my regular 3 month dose. They have gotten much worse with pain moving to my glutes. I have severe pain standing, walking and even laying down.

Tried the chiropractor, but no relief. No real solutions or diagnosis yet. May have to quit the Lupron for quality of life. (Doc would like me on it for another 3 years.) Please pass along anything you find as alternative medication or treatment to relieve pain. Thank you for sharing your situation. So easy to feel like you are the only one.

kam23,

Thanks for posting this. I indeed had similar symptoms, and felt the same as you as the pain and weakness built up, so maybe you can benefit from my "adventure". I was reluctant to bring it up in this forum thinking it too rare to have any interest. You've flushed me out.

Some time after my fourth 3-month Lupron injection, this one alternating into my left gluteus, I began to experience what felt like nerve pain from my groin down my left leg to my ankle. It felt like electric shocks at times. Over a few days, this progressed to pain such that I could not put any weight on my left leg what-so-ever. Near about this time I noted a large lump had developed on my left gluteus, say baseball size or larger. Deep probing with my fingers revealed the site of pain deep in the tissue. My wife says I had developed a "Kardashian butt", whatever that is. Apparently some celebrity revered for her huge butt. Docs were skeptical until I sent a photo (which thankfully I won't attach).

My oncologist, on seeing it in person, said he had never seen anything like it. Neither had his staff. A CT scan revealed a "large nonspecific hypoechoic area within the left buttock soft tissues with increased vascularity suggestive of a phlegmon or possibly hematoma." Huh? Phlegmon? Anyhow .....

Maybe a month later, suddenly (over the course of a week), I slowly regained pain-free normal use of my left leg, and the lump is very slowly spreading out and receding. The leg is still a little weak. I suspect the administration of the Lupron shot hit a vein causing a slow bleed and a hematoma that eventually got large enough to press on one or more nerves running from my gluteus to my ankle. That's my speculation. The docs offered no comment.

My docs wanted me on Lupron for 18 months (because of Gleason 9). As of last week, I stopped at 12 months. I believe the difference in yield from 18 months versus 12 months treatment was not sufficient to justify the loss of quality of life you give up with more Lupron.

Aren't you due to stop? Also, there are alternatives to Lupron shots.

Hope this helps.

Studies have shown that if you have localized prostate cancer and are over 70 years of age ADT adds no real benefit to radiation therapy. I am 74 but self-castrated just to hedge my bets. I have been on TRT since 2008 and when I stop applying my Androgel I go castrate within 60 hours. My radiation oncologist wanted to jab me with Lupron so bad he could taste it when we first met and didn't believe me until he had me tested and I came back at 12 ng/dl which is lower than the Lupron literature promises. I just got my 3 month post 5 Proton radiation PSA yesterday and it was undetectable. Good luck to you.

Sorry. Diagnosed at 58. Now 60 and about 1.5 years into this journey.

You don't mention your age. It has a lot to do with whether you need ADT or it is even helpful for your case of cancer.

I will consider a move to Thailand as it appears that you can afford to be ill and afford to die and still have money left over for a nice place in heaven with a view. Things are finally looking up. Thanks

I have only had one injection of 3 month Lupron. AWFUL but better than looking up from under the ground. What choice to we have, maybe live long or die. I am very depressed though, have terrible fatigue, back pain, gut pain, and more. My surgery date is Aug. 3 to cut the little bastard out then radiation. How much does radiation cost as I am in Thailand, the hospitals are good and it is a lot cheaper here. My whole ordeal started 2 months ago from my normal annual physical to then a spiked up PSA to 6.9 and after the biopsy cancer in both sides and a Gleason of 8 but both the CT and the Bone S came back no spread. All the scans, all the X Rays, blood works one night in the hosp. for the Biopsy all Lupron cost and then the cost of the surgery with one night in the ICU and a week on the hosp. in a private room was only $10,000 American total. God Bless all of you.

On lupron for 15 yrs now zoladex 2-3 yrs. Tremendous muscle atrophy (sarcopenia). Hot flashes resolved over a short 1-2 yr. period. Lupron and all ADT drugs do the same but also the only treatment that has done anything over 20 yrs of stage 4 disease.

Thanks for the reply. One oncologist told me at the beginning of radiation that I would also be taking Lupron (later switched to Eligard by Mayo) for 36 months - "if I could handle it." I asked what was meant by that and now I know. There is no way I can continue to live like this for 36 months. I hear about men going many years on ADT and it not affecting them like it affects me. It's interesting how it affects everyone differently. I'll certainly ask about monthly injections to see if that's a viable option. Thanks for the tip!