I have a question to those of us using Lupron

Posted by dpcarriere @dpcarriere, May 26, 2022

I was at Mayo Scottsdale today discussing my situation with a Radiation Oncology PA. I told her of my extremities pain caused by, in my opinion and 1 year experience, the use of Lupron. She told me that, according to Mayo data, I was only part of an 11% group complaining of pain due to Lupron usage. I question the accuracy of that data and so I ask for a response. The question being are only 11% of us experiencing extremities pain due to the use of Lupron?? Another way to pose the question. Could it be that Mayo is only aware of 11% of Lupron induced pain? Has someone asked 100 of us and received only an 11% positive response?

I might pose this question. If you are using Lupron are you experiencing pain in your arms and legs?? How many "no" answers are there among us??

This is an important question as 11% is not that significant a data response.

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

Agree.
I have been on Lupron since Oct last year, 12 weekly injections in my case. And like many of the comments above, apart from the obvious Libido side effects which I have just accepted as goes with the territory, have found going onto low fat low sugar diet, low alcohol and more plant wholefood diet, losing weight 2 stone
And daily exercise (am 61 yr old) has prevented me getting the worst of the other side effects reported to be common with this treatment. Usually walk every day and or run 5k 2 to 3 times per week and try and do a 20 min workout with light dumbells 3 to 4 times a week to help with muscle wasting.
My consultant wants to keep me on it for another 18 months along with Enzalutimide which I take daily 4 tablets 160 mg.

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I have just received an answer to my Lupron and muscle/bone pain.
The cause was not Lupron. I have developed a statin intolerance. Odd that this has occurred simultaneously with my cancer but that is the case. I stopped taking my statin and low and behold as of today after a month of no statin I am near pain free. Perhaps Lupron stimulated the statin response - who knows. I doubt it was merely coincidence.

But the fact remains - by stopping statin my pain has literally disappeared. Now the question becomes - how will I control my lipid issues without statins??

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@dpcarriere

I have just received an answer to my Lupron and muscle/bone pain.
The cause was not Lupron. I have developed a statin intolerance. Odd that this has occurred simultaneously with my cancer but that is the case. I stopped taking my statin and low and behold as of today after a month of no statin I am near pain free. Perhaps Lupron stimulated the statin response - who knows. I doubt it was merely coincidence.

But the fact remains - by stopping statin my pain has literally disappeared. Now the question becomes - how will I control my lipid issues without statins??

Jump to this post

Interesting, thanks for posting that.

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@dpcarriere

I have just received an answer to my Lupron and muscle/bone pain.
The cause was not Lupron. I have developed a statin intolerance. Odd that this has occurred simultaneously with my cancer but that is the case. I stopped taking my statin and low and behold as of today after a month of no statin I am near pain free. Perhaps Lupron stimulated the statin response - who knows. I doubt it was merely coincidence.

But the fact remains - by stopping statin my pain has literally disappeared. Now the question becomes - how will I control my lipid issues without statins??

Jump to this post

My wife is statin intolerant and uses Cholestraymine (Prevalite). A powder which is mixed in water. It seems to work for her.

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@norske46

My wife is statin intolerant and uses Cholestraymine (Prevalite). A powder which is mixed in water. It seems to work for her.

Jump to this post

Interesting,I’ve never heard of that. I’m having a lot of shoulder issues/pain. My last 13 month Lupron concluded 2 months ago so I was concerned and had early lab work done. This weeks testosterone is 17 and PSA 0.05 so thinking highly unlikely my cancer would be causing this. I did start Crestor 10mg about 6 months ago.

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@dpcarriere

I have just received an answer to my Lupron and muscle/bone pain.
The cause was not Lupron. I have developed a statin intolerance. Odd that this has occurred simultaneously with my cancer but that is the case. I stopped taking my statin and low and behold as of today after a month of no statin I am near pain free. Perhaps Lupron stimulated the statin response - who knows. I doubt it was merely coincidence.

But the fact remains - by stopping statin my pain has literally disappeared. Now the question becomes - how will I control my lipid issues without statins??

Jump to this post

I recently had a similar experience while on Relugolix and statins. I was experiencing extreme muscle and joint stiffness which to some degree was expected being on Relugolix, however, my Doctor recommended stopping the statin for 5 weeks. The result was quite remarkable.
My Oncologist suggested that the statin combined with Relugolix could have been the problem. I will be switching to Zetia in an attempt to control the cholesterol.

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