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.

Profile picture for gaws @gaws

I am on this site to see if I can find help for my husband. I really appreciate the comments about the antihistamine and the strength resistance training. Also the suggestion to drink liquid protein after exercise. My husband was a runner and a mail man for many years. Since he has been on lupron, any exercise causes his legs to ache and often he has shooting pains. His doctors have never suggested this as a side effect. In fact , when we've mentioned it , they've seen surprised. So all these comments are very helpful. Especially knowing he is not alone in this pain.

Jump to this post

@gaws

After 44 radiation treatments and 4 months of Lupron I had to stop the Lupron because of severe 24/7 sweating, headaches, leg pain and cramps, and joint pain in general. I stopped because i thought that the Lupron was going to kill me. After 5 months the side efects have dropped in severity by about 50%. I have < 0.1 PSA and < 7.9 testosterone on tets at 1 and 3 months after exiting Lupron. I am 83 and exercise hard about 4 days per week. Your husband's experience is normal for some people.

REPLY
Profile picture for gaws @gaws

I am on this site to see if I can find help for my husband. I really appreciate the comments about the antihistamine and the strength resistance training. Also the suggestion to drink liquid protein after exercise. My husband was a runner and a mail man for many years. Since he has been on lupron, any exercise causes his legs to ache and often he has shooting pains. His doctors have never suggested this as a side effect. In fact , when we've mentioned it , they've seen surprised. So all these comments are very helpful. Especially knowing he is not alone in this pain.

Jump to this post

@gaws I just started reading this forum and asking questions while watching a friend go through it, and have found many existing discussions very helpful, too. Yes, it seems the side effects are very common.

I just wanted to add that the "surprise" from doctors who never mention the side effects of a treatment, is even more common across like 90% of doctors and 90% of drugs for 90% of conditions! The Internet has made a real change in medicine for patients to help share real information from actual patients. Just maybe medical practice is becoming a little more open about what they already know well. For many years they were specifically taught to not scare the poor patients who might then avoid or decline treatment or imagine side effects that they aren't really suffering! While these are real issues when it comes down to it I vote for honesty.

REPLY

I am on this site to see if I can find help for my husband. I really appreciate the comments about the antihistamine and the strength resistance training. Also the suggestion to drink liquid protein after exercise. My husband was a runner and a mail man for many years. Since he has been on lupron, any exercise causes his legs to ache and often he has shooting pains. His doctors have never suggested this as a side effect. In fact , when we've mentioned it , they've seen surprised. So all these comments are very helpful. Especially knowing he is not alone in this pain.

REPLY

I get cramps in my calf’s

REPLY
Profile picture for alrunner @alrunner

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

Jump to this post

I have been getting cramps in my thighs almost every day night 🤷‍♂️

REPLY

90 days on Lupron for PC lymph node metastasis. Joint and muscle pain from hips down is unmistakable post injection. I have had CRPS in the right extremity (leg, foot) for 14 years. That pain is what I characterized as extreme. About 4 - 6 weeks into Lupron, the CRPS pain (I didn't think could worsen) became intensified and is now horrific! As I mentioned, the pain in the hips, muscles/joints in both legs is very real and all started after Lupron. Clearly a correlation. Causation, perhaps.

REPLY
Profile picture for jimbo12 @jimbo12

(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.

Jump to this post

Hi. I'm 76. I have had significant "muscle wasting", too. This was before any treatments. I've had one Lupron shot and will start abiraterone within a few days when it arrives. Will take prednisone to offset the side effects (the damage ) of the abiraterone. Medical technology seems so primitive! I too was a walker, long distance, then however triggered, aggressive cancer hit, lesions multiplied. I must say, aspirin and celecoxib greatly help. I wish you the best.

REPLY

SUMMARY: Gleason 9, Group 5, with local spread as far as we know.

I am currently 54 (I started LUPRON at 52). I have been on Lupron and Abariterone (Zytiga) with prednisone for two years. I will be done in March with the Abariterone, but LUPRON will stay for at least another year or possibly life. This is the plan. I have constant leg pain ranging from 2 to 9, which makes it hard to walk long distances. I also have trouble climbing stairs. Most days, it's somewhere between 2 to 9.

I had an RP, and then six months later, cancer reoccurred, so I went through 35 rounds of radiation and ADT. Along with leg pain/weakness, I have days of extreme fatigue. I also have memory problems that cause me to stop mid-sentence to think of what I need to say next. It can be a challenge. I still walk at least a mile most days and do resistance training about 4 to 5 days a week.

Who knew Testosterone is such a critical chemical?

REPLY
Profile picture for shimutale @shimutale

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

Jump to this post

I am coming up on 7 months since Lupron injection and thankfully my leg pain during runs are just now reducing however I can’t say the same for the hot flashes. It does seem ,similar to yours every hour or so and when they occur I sweat enough for shirt to be wet. My wife believes they are reducing in occurrence but I haven’t noticed. Hopeful if legs are feeling better that soon these hot flashes will be gone. Knowing what ladies go through I really shouldn’t complain as some day mine will be gone. Best of luck, get healthy.

REPLY
Profile picture for alrunner @alrunner

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

Jump to this post

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

REPLY
Please sign in or register to post a reply.