Lupron: Anyone have muscle weakness and severe leg pain?

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.

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

@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?

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.

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.

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.

(1) I am an outlier. (2) I was a teenager in the 1950s!!! (3) I took ONLY two shots of Lupron and stopped in 2022. (4) I was too stupid to realize that without testosterone, I would lose my muscle mass. The doctor never told me. (5) I used to walk 4 or 5 miles every day to do errands. Walking was my only pleasure. (6) I have NOT done so for TWO years now because of muscle weakness. (7) Because I am so old, I may never regain my pre-Lupron muscle mass before I die. (8) But when I read here about the terrible suffering of so many other men, I am ashamed to wallow in self-pity.

I think jimbol2 (above) is indeed an outlier.
I am 80 years old and have had radiation and three six- month Lupron injections. Will get a fourth (and last) in a couple of weeks. My side effects have been occasional hot flashes (not a big deal), increased body fat (annoying), some random muscle pains which usually resolve after a few days, and fatigue. I take short naps when I feel like it but otherwise try to stay active. I do a cycle of weight machines at a gym three times a week. My dog insists on being walked so I walk two miles three or four times a week. I've started carrying some weights in a backpack and slowly increasing to hopefully lose some weight. I take a calcium supplement to minimize losing bone density.
My testosterone may or may not come back post Lupron, but if I can lose the excess fat I think I'll be OK.
Everyone is different and I may be relatively lucky, but I don't think anyone should be scared away from Lupron because of potential side effects without giving it a try. You never know of course, but after two years of it I'm hoping to die many years from now of something other than prostate cancer.

4 weeks in on Lupron and glut, hip and quad pain is real. I just keep pushing weights and riding my bike and doing spinning classes. 5 more months. Going to ask if I can change to Orgovyx at my 3 month shot appt..

How are your hot flashes like? Mine have been hectic coupled with serious sweating at almost hourly intervals. I live in Zambia, Southern Africa and Livingstone in particular which is one of the hottest places in the country. I was commenced on Luprodex injection and Bicalutimide 50mg tablets in March 2023 (every 3 months). The 2nd one was in July 2024 and had the last one in October 2024 before under going Prostatectomy on 5th November 2024. Three months down the line, still experiencing serious hot flashes and sweating. Wonder when these side effects will go down