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.

I did 2 years of Lupron injections with no pain. Hot flashes and fatigue were my only side effects.

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I took Lupron for 25 months. About two-thirds of the way through that I told the urologist I was thinking of quitting Lupron because my legs were so weak. I have always been very athletic, running, walking and golfing. I had no energy in my legs at all. Every step was a strain. He would not let me quit. That was about three years ago and I still have tremendous weakness in my legs. My energy never returned. If I could do it again I would seek an alternative to Lupron.

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I have been on Lupron for 4 years and I have low back pain and joint pain constantly, also chest pain. I also have a good friend who has suffered from depression and suicidal thoughts from it.

Also I had a knee replacement and they gave me opioids for pain and I had a severe reaction lost 40 lbs in 6 weeks it was not fun. I figured it out myself simply by looking up drug interaction with Lupron on the net number one drip interaction are opioids. I don’t know why an internal med Dr would not pick up on that.

When you look up Lipton on the there are many diadem affects to watch for.

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I have a question for Lupron users - heretofore to be known as users.

Do a self assessment.

(1) Does your level of pain have any correllation with your level of excercise?

(2) Do any of us receive different doses?

Input to me please.

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@kujhawk1978

Given the heterogeneous nature of PCa, there is a Loy of clinical data and personal choice that goes into a decision on if and how long one is on Lupron. In my case, we used triplet therapy, chemotherapy, radiation and a planned 24 months of ADT. We stopped the Lupron after 18 months given my response to the triplet therapy. There were studies pointing to 18 months as being just as effective as 36. The key I think is if the clinical data and your personal preferences support stopping treatment after a specific period and response, you must actively monitor through labs and consults with your medical team and have decision criteria about what constitutes a reason to go back on treatment and a decision point when to do so. For me, that criteria involves labs every 2-4 months, three or more PSA results that showed a continuous rise, PSA above .5, imaging that showed recurrence and then a decision to treat and with what, for how long...I am not a fan of "indefinite...! This chart shows my clinical history, it's been four years off treatment, I have actively monitored my PSA and seen my urologist, haven't met our decision criteria to resume treatment.

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kujhawk1978 nice data, very impressive - wish I could do that. You should be leading this group.

Clarification please - define PCa.

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@dpcarriere

kujhawk1978 nice data, very impressive - wish I could do that. You should be leading this group.

Clarification please - define PCa.

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PCa is short fir Prostate Cancer

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@dpcarriere

I have a question for Lupron users - heretofore to be known as users.

Do a self assessment.

(1) Does your level of pain have any correllation with your level of excercise?

(2) Do any of us receive different doses?

Input to me please.

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@dpcarriere, I moved your question for Lupron users to the discussion you started earlier. I think participants in this discussion like @32fl @kujhawk1978 @norske46 @scullrower @upnort @landc @hergiew, no all of who experienced pain with Lupron.

Here are the questions @dpcarriere asked:
"(1) Does your level of pain have any correllation with your level of excercise?
(2) Do any of us receive different doses?"

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I'm not sure my original reply was posted so I repeat it. I live in a senior community that offers exercise classes 5 days a week and I generally have attended at least four of those days and often take a walk on the days there is not a class. In addition I golf regularly but could not do that while taking Lupron because my legs did not have enough energy to allow me to do it.
I am unsure of the dosage of Lupron I received but took it for 25 months.

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Been on Lupron, for 8 months and no pain or fatigue.
Able to exercise daily and changed diet to one of largely plant based, apart from low fat chicken and fish.
I think daily exercise and good diet, low fat, low sugar and no dairy staves off the worst of the side effects and I can certainly confirm thats been my experience to date.

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I took Lupron for two full years after RP and 44 radiation treatments. I am extremely tired and weak. I work out daily and eat a heart-cancer healthy diet. My diagnosis was stage 4 aggressive. My cancer had spread to my lymph nodes. I was given three to five years to live if I followed the treatment plan. I am in year four. Please keep this discussion going.

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