Lupron: Anyone have muscle weakness and severe leg pain?

Post-RP, I was on Lupron and abiraterone (October 2022 to October 2024) along with salvage radiation (39 treatments from December 2022 to February 2023). In December 2023 after having Covid, I began experiencing severe nerve pain in the left leg accompanied by weakness and numbness. I was put on gabapentin and was eventually put on a dose that made the pain more bearable. In the meantime, the right leg has developed the same symptoms, although they haven't been quite as severe. The neurosurgeons and neurologists are uncertain what has caused all this pain, weakness, and numbness. Possibilities have included bilateral radiculopathy, peroneal nerve entrapment, and B6 toxicity, each of which is present to some degree, but not enough to explain the situation definitively. In the meantime, towards the end of my ADT, I began to feel better, at least in terms of pain. Since ending ADT in October 2024, things have become even better, although I'm not giving up the gabapentin yet. My MO says that my meds would not cause inflammation, but I have to wonder if the loss of hormones have made it more difficult for my body to deal with possible inflammation and the pain.

I started bicalutimide 50mg on December 1st and had my first Lupron shot on December 6th. I have pain in my lower right leg every night for a few weeks now. I do not notice it during the day when I am active but it has become very annoying at night. Aleve has helped a little. Keeping my right leg cool has also helped. I will sleep with my right leg outside my covers but tuck my foot back in. Between the hot flashes and leg pain, sleep has become sporadic. I did start Estroven, which is an over the counter menopause aid, on January 7th, which my RO says may help with the hot flashes. You have to be on it at least 28 days before it is effective according to the instructions. So far I haven't noticed much difference but I'm just bumping up against the 28 days now.

Thank you so much for your response. My leg pain is most noticeable during my runs and I feel daily leg discomfort is only a result of the runs, Normal leg tiredness. During strength training no real issues. Once again, thank you.

@alrunner, it must be so hard to struggle through 4 miles when you're accustomed to running marathons and training. I'm tagging a few of the fellows here like @thehowlingdog @ssonkin @jerryegge @rice @seasuite who are also runners and are living with prostate cancer treatment.

Just to clarify, you only experience the leg pain when running, correct? How about when you do other activities like strength training or stretching?

I was a pretty good marathon with decent speed running 30-40 miles a week. Received a Lupron injection 6 months ago and completed Proton radiation 4 months ago. PSA is was tested 2 days ago and is undetectable. For past 2 months I have been dealing with leg pain during runs staring in mile 2 or so. Legs feel like mile 30 of a marathon with so much discomfort I only managed 4 slow painful miles today. Doctors don’t give me a definitive answer.

I know I am lucky to be out there but can anyone tell me of similar experience and if you ever got past the leg pain. This only happens when I run.

Of course I have other side effects like hot flashes.

Thank you
Al runner

I would not stop the Anastrozole which lowers estrogen and is given to woman at risk for breast cancer. I take Anastrozole, Amour Thyroid and Clomid for low testosterone. The Lupron lowers your testorone to near zero and this is what is responsible for the way you feel. Have you had radiation for the prostate cancer or is it so mild they chose to treat it with Lupron.
You must at least have good insurance because the Lupron shots are like $5k
Five years on Lupron is crazy.

65 yo male, Brac 1 positive w/ breast cancer & mild prostate cancer. Have endured monthly Lupron shots for 6 mo. while taking anastrozole daily. Also developed L4-L5 spinal stenois and osteoarthritis in both hips and knees. 5cm breast tumor shrinking but with every Lupron shot groin & thigh pain getting worse and worse. Very sexually active before Lupron and know not in 5 months. On a walker 95% percent of time and cane the remainder. I'm still working full time and quality of life is dismal. No pain or discomfort from cancer but leg and hip pain very debilitating. Considering going against Dr. and stopping Lupron & anastrozole after tumor removal scheduled for February 2025. Dr. had suggested Lupron for another 5-10 years after surgery. No way.

Welcome, @mkhaz123. A few members have taken Nubeqa, although I'm not sure for how long. Check out these related discussions:

Search results "nubeqa" https://connect.mayoclinic.org/group/prostate-cancer/?search=Nubeqa+&index=discussions

I was on lupron and Erleada for 13 months and that started 30 months ago. I am 76, Gleason 9, CR, advanced PC and I had RP in the 7th month. The meds certainly slowed me down , slept poorly, lost muscle, gained belly fat, but this was all manageable. My T went down to 9. I have been off of meds for 15 months. My T is 100, my PSA is .01. I am on a plant based diet. I am committed to living a good life with my friends and family as long as possible. I am in favor of denying my cancer of as much of the testosterone food as possible.

Testosterone gets a bad rap with prostate cancer treatment. It does not cause cancer but will provide fuel that causes the cancer to grow faster. I have heard the phrase that Testosterone is like rocket fuel for Prostate Cancer I think a better analogy would be Lighter Fuel.
Have you had a Testosterone test?
Six months after radiation and Lupron my Testosterone was about 530 and I felt like crap all the time. After my first dose of T all the problems I was experiencing went away within a couple of days. My Urologist was strongly opposed to the treatment and denied that there was any downside to Lupron Treatment. I got a new Urologist who is agreeable with the treatment and not concerned.
If you take Testosterone your PSA will go up it is part of the biochemical process. I went from a PSA of .1 to .54 but it stabilized there.
Testosterone Is what makes you a man and helps with drive, healthy bones and Muscle development and there are negative consequences to lowering it.
I am 67 and healthier than I have been in a long time I would rather live another ten years healthy and active then 15 in the nursing home.
There are a number of good YouTube videos from Urology seminars that address that address TRT after Prostate cancer.