Lupron: Anyone have muscle weakness and severe leg pain?

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.

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

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.

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.

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.

Sounds like you are having the same kind of severe cramping I had shortly after my first Lupron shot. While picking up another RX at Walgreens in Durango, CO in early July I asked the pharmacist if there was anything that I could get to help leg cramps/pains. He asked me to tell him more about the leg pain. I reported my Lupron injections and also the 2nd generation drug Nubeqa that I was taking. He then told me he was a oncology pharmacist for 8 years. During his time in that clinic they studied leg cramps from Lupron - since most patients had them. However; there was a smaller group of Lupron recipients that did not. He said upon investigation of the non-leg cramps group they learned that they were all taking antihistamines. I had been taking Allegra right up to my first Lupron shot in early April, but quit since it was for a seasonal allergy. He suggested I restart the Allegra - I did and have had no leg cramps or pains since. A friend whose also getting Lupron visited me for a week about the same time and I suggested as of his second day after a night of leg cramps that he try the Allegra. His cramps also ceased and now two weeks post have not returned as long as he takes the antihistamine daily. I hope this works as well for you.

Oh, in addition to the antihistamines and relative to muscle weakness I hired a trainer to work with me on resistance training. After about six sessions with him I now workout from two to three times per week for a good hour - working on upper and lower body. What I did not know about resistance training and all the machines at the fitness center would have filled a book!

In addition I consulted with a PhD Biochemist, Clinical Nutritionist who has me on a number of supplements. He also recommended I speak with my trainer to get what would be as much of a total body workout in 10 minutes as possible two to three times per day. I use a 10 lbs. medicine ball and and elastic cord with handles for five different exercises. The nutritionist advised that within the first 10 minutes after the workout I should eat a small amount of dried fruit for a high sucrose dose (three or so dried dates, cherries or apricots) and follow it with 4 ounces of liquid protein. He said the exercised muscles will up take those nutrients and actually strengthen. I'm 79 YO and am now in some of the best shape ever. Also lost 20 lbs. Good luck!

Thanks for the hope. It’s great to hear. I am already seeing a natural path doc. The suggestions for strength training and nutrition to build muscle is exactly what I need.
Thanks!

Thank you!!!