Hi!57 yo. Three months after my first lupron shot T was almost zero and SE's manageable. With my second shot at that time I got really down. Headache, pain in tendons and joints, fatigue and terrible mood swings, mostly sadness. My weight training sessions got really hard to get through. I called my oncologist who didnt think my symtoms were related to the injection since my T level were almost zero already before the shot. He refered me to my GP who just found low blood counts.
My question is if any of you have a similar experience as I have, and if there are any studies on the subject. I doubt that the side effects of lupron is only related to low T but also to the drug and substance itselt. Thoughts on this please?
A couple of weeks after the second shot I got more in balance and strong again.
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I only ever had one shot of Lupron & could not tolerate the SE. I would go to sleep while driving & in the middle of a conversation, my reaction was to not have a second one.
There are other ADT treatments out there with less SE like Firmagon or the T2 patch.
This is only my personal reactions & not my advice as I am only a fellow suferer.
I had a severe reaction to a Firmagon injection that went into the muscle. But it only lasted 24 hours for me. Following the correct injection protocol is critical for all ADT drugs. Not saying your injection was not handled correctly, but before your next injection, be sure to fully understand the correct protocol for Lupron and don't be shy about directing/correcting the nurse.
Yes!! My husband started with a 1-month injection of Lupron, then did Orgovyx for 3 months, then got a 3-month Lupron injection before going back to Orgovyx. He felt down, sad, and had achy joints when on Lupron, whereas he feels pretty much just like himself with the Orgovyx (I mean, has hot flashes and no libido, but otherwise normal). We have no idea why, and his MO doesn’t have enough experience with Orgovyx to know.
interesting. I went over a year on Firmagon with monthly injections with only the normal SE of a large well, fatigue and muscle loss. Those fatigue/muscle loss SE have been cumulative and if I miss a few days on workouts, it makes them much worse. My MO said that the SE were not going to get worse once T hit undetectable, but that’s not my experience the fatigue gets worse because you continue to lose muscle
After 12+ months, my reaction to Firmagon included flu like symptoms for a day or two. One injection was not administered properly (hit a blood vessel and injected too quickly) and the flu like symptoms were much more intense.
In June, I switched to Lupron. Through only 2 injections, no flu like symptoms with lupron and no injection welp. But the SE from no T, of course, are unchanged and cumulative.
I dealt with a lot of joint pain with Lupron. Seemed to get a little better over time. I also take glucosamine chondroitin and fish oil pills which has helped as well. Hot flashes were bad early too but seemed to get better. I'm on Eligard now which I believe is very similar to Lupron. Good luck!
I was on a 6 month Lupron treatment starting in January 2023 in 3 month intervals. for about 10 days after the 2nd injection I felt just as you described. It was terrible not knowing how long it would last. After that 10 period I slowly returned to feeling like shit before the 2nd shot instead of hammered shit. My T was essentially essentially zero for quit a while.
One thing to remember though: My last injection was April 19th. In late August the number of hot flashes increased and the intensity tripled. Entire body sweating instead of just the forehead. This lasted about 3 weeks and then start subsiding.
On September 13th I had my first post ADT blood test and T was 360. Only thing I can think of is that when the T start coming back the hot flashes intensified. Now I still have maybe one tiny hot flash per week and getting stronger by the week.
Hi again Markprince!I just want to feed back to you that I, now three months out from my last 3 month lupron shot also experience what you describe. Almost no hot flashes for last three months but now the heat is on again. Just hoping this is a sign of T coming back ever so slowly.
I hope you are doing well and wish you a merry christmas from Sweden!
good luck to u and god bless. My prognosis is only conjecture but the drastic increase in hot flash intensity and frequency exactly coincided with the rise in T.. I don’t think it was a coincidence. My T is now about 500. 6 weeks after the first injection it was undetectable
I may be super-human.....(well I am super-nice after all) I have never had any (bad) side effects from Lupron, oops correction: I married that *&^%(*&&^^%*! woman who's my ex-wife now (Thank You Jesus)....
I was taking one month shots for nine months with moderate side effects PSA went to undetectable and psma pet ct showed No evidence of disease. I wanted to complete the full year of treatment suggested by my medical oncologist and so took a three month shot to carry me through that last three months. I am having pretty much the same side effects you describe at two months through this cycle. estradiol patch helped previously but at present seems ineffective. Thirty days to go, cant wait.
I stopped posting several months ago. I did post about the severe depression I had after my first (and only) Lupron shot. The clinic refused to give me a second shot. I knew that was going to make the cancer worse and that seems to have happened. And since that technically means I am not "castration resistant" I am not eligible for any of the meds for castration-resistant requirements. I'm expecting to be declined for the Pluvicto therapy because of that as well. SOC is not fun. The side effect I had was severe depression caused by lowered testosterone. I already had bad depression and this turbo charged it.
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