Lupron

Posted by beulah4 @beulah4, 2 days ago

I have been on Lupron since June, 2016. I have injections every six months over a two year period. This is followed by what my oncologist calls a “Lupron Vacation” until my PSA begins to rise. My doctor says I have had an A+ response to Lupron.
Over the past six months I have begun to experience muscle pain in my thighs and lower legs. Has anyone experienced this reaction?

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I see no one has answered you and all I can tell you is my experience as a nurse. We had a patient we gave monthly Lupron injections to. This was 40 years ago(nothing to do with prostate cancer) and I no longer remember the dose. One day he came inside and had a funny gait. Told me his leg hurt. This guy rode his bicycle all over. Very active. I looked at his leg and sent him to the ER. He ended up having blood clots-2 in his leg. The psychiatrist took him off the Lupron citing that as the cause and he never had another Lupron injection.
This is something you should talk with your Dr about. Chances are it’s nothing but, if you think you might have blood clots you should be seen ASAP. I don’t want to scare you but I also don’t want a clot to break loose. They can do an easy Ultrasound and let you know. I wish you well.

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Profile picture for 3oakley2 @3oakley2

I see no one has answered you and all I can tell you is my experience as a nurse. We had a patient we gave monthly Lupron injections to. This was 40 years ago(nothing to do with prostate cancer) and I no longer remember the dose. One day he came inside and had a funny gait. Told me his leg hurt. This guy rode his bicycle all over. Very active. I looked at his leg and sent him to the ER. He ended up having blood clots-2 in his leg. The psychiatrist took him off the Lupron citing that as the cause and he never had another Lupron injection.
This is something you should talk with your Dr about. Chances are it’s nothing but, if you think you might have blood clots you should be seen ASAP. I don’t want to scare you but I also don’t want a clot to break loose. They can do an easy Ultrasound and let you know. I wish you well.

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Thank you. I see my doctor in two weeks and will definitely discuss. In the meantime heating pad and massage can bring some relief.

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The side effect of muscle loss has made my legs do the same with less. I particularly noticed it in my thighs. Might be the same for you. Still it is wise to bring it up with your doc. Best to you on your journey…

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Profile picture for Sicetnon3 @sicernon3

The side effect of muscle loss has made my legs do the same with less. I particularly noticed it in my thighs. Might be the same for you. Still it is wise to bring it up with your doc. Best to you on your journey…

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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.

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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

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Profile picture for kujhawk1978 @kujhawk1978

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

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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.

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Profile picture for beulah4 @beulah4

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.

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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.

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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.

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