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.
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.