Lupron: Anyone have muscle weakness and severe leg pain?

Posted by kam23 @kam23, Jul 14, 2023

I have PC and have been on Lupron injections every 3 months for 15 months. I am experiencing severe leg pain in hamstrings and glutes. Has anyone else experienced this or tried monthly shots?

This has been getting worse for the last 3-4 weeks. I’m afraid I’ll be in a wheelchair or have to stop this form of testosterone elimination therapy.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

frazer | @frazer | Jul 22, 2023

Wow, you are having a very difficult go of it! Sorry to hear that. One thing I did not mention is that I work hard on staying hydrated. That does cause me to get up two to three times a night to urinate. Be sure you drink lots of water. May even want to add an Electrolyte like Pedialyte. You are on vitamins including calcium with magnesium correct? My PhD nutritionist has me on Now brand Red Mineral Algae Calcium 1,000 mg twice daily. He tells me it is much better absorbed than the standard CA's. Good luck on getting past this!

kam23 | @kam23 | Jul 22, 2023

In reply to @frazer "It took 48 to 72 hours. Did you take the Allegra 24 hour? You're welcome! Good..." + (show)

Got the 24 hour Allegra and took it right away. Just took my second dose…morning of day 2. Hoping for similar results to your experience. I was almost in the ER yesterday.

Thank you.

frazer | @frazer | Jul 21, 2023

It took 48 to 72 hours. Did you take the Allegra 24 hour? You're welcome! Good luck!

kam23 | @kam23 | Jul 21, 2023

In reply to @frazer "Oh, in addition to the antihistamines and relative to muscle weakness I hired a trainer to..." + (show)

How many days after starting Allegra did it take to start feeling better? I took one dose this morning. It’s late evening and I’m still in a lot of pain. My wife wondered if it would take a few days or so to see an improvement as some drugs take time to build up to a therapeutic level. Thanks so much for responding.

kam23 | @kam23 | Jul 21, 2023

In reply to @frazer "Sounds like you are having the same kind of severe cramping I had shortly after my..." + (show)

Thank you!!!

kam23 | @kam23 | Jul 21, 2023

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!

frazer | @frazer | Jul 20, 2023

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!

frazer | @frazer | Jul 20, 2023

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.

drj | @drj | Jul 19, 2023

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.

kam23 | @kam23 | Jul 19, 2023

In reply to @drj "kam23, Thanks for posting this. I indeed had similar symptoms, and felt the same as you..." + (show)

@drj

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.

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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.