Lupron: Anyone have muscle weakness and severe leg pain?

@gaws a quality electric blanket and ski socks have greatly helped me manage the leg cramps and pain.

@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.

@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.

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.

How is your back? Have you ever had it checked for compression or alignment?
Sometimes a compressed nerve in the spine will cause pain somewhere else in the body.

I have been on Lupron since March 2023. 45 mg every six months. No vacations and none have been mentioned.

To your question, yes I have intermittent pain in the upper legs and the hips. Not debilitating but noticeable. I actively exercised prior to PC and continue to do so: weights (much lighter now), cycling and walking. The leg pain does not affect these activities and the exercise seems to reduce the occurrence of the pain. I consider the discomfort and the other side effects the price of controlling the cancer.

Keep up the good fight brother.

So, you're on Lupron now...

Question, what are your PSA results over time?

If your PSA has increased while on ADT, that may indicate castrate resistance. If that was the case then a possibility may be metastases to the bones.

Were that the case, castrate resistance, a discussion with your medical team about imaging to affirm or deny. If it was the case, the next discussion could be with your radiologist on SBRT.

More of your clinical history would help the forum answer.

I've been on Lupron since 2016, four shots over a two year period, on "vacation" until PSA begins to rise, back on Lupron for another two year period. I am on injection #14 now, next due in December. This leg pain has just developed over the past six months.

I'm a little confused...

You say you've been on Lupron since 2016..then you say you've had Lupron injections every six months for two years.

Then you say this is followed by a Lupron vacation...

So. was your your time on Lupron from 2016-2018 and you've been off since then?

The muscle pain may just be the stiffness in muscle and joints that is a side effect of ADT.

Would've hurt to rule out DVT though. Still, you say you're experiencing this over the last six months so I'm thinking of it was DVT you'd know it by now!

Kevin

I'm trying hard with strength and conditioning classes, balance, boxing, PT, Vitamin D3, calcium, etc. I know muscle loss is part of the Lupron/ADT protocol, but I've just never heard this leg pain complaint from others. Primary doctor tested lower legs for vascular issues, no problem there, but will certainly bring it up with oncologist to see if other patients have experienced this.