Lupron: Anyone have muscle weakness and severe leg pain?

Posted by kam23 @kam23, Jul 14, 2023

I have PC and have been on Lupron injections every 3 months for 15 months. I am experiencing severe leg pain in hamstrings and glutes. Has anyone else experienced this or tried monthly shots?

This has been getting worse for the last 3-4 weeks. I’m afraid I’ll be in a wheelchair or have to stop this form of testosterone elimination therapy.

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

Oh on the other note Eligard makes your sex drive to zero you are literally chemically castrated during your treatment period.

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Profile picture for bonjas @bonjas

@pesquallie exactly I nearly threw in the towel but my oncologist encourage me not to, she said January is just around the corner, get yourself a fan for the hot flashes its help a little.

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@bonjas
The problem is that the side effects will probably last at least 9 months beyond the end of ADT treatment and could be for the rest of your life. More than half of men, especially those who are in their 80's, never recover from ADT. After 11 months I still have my side effects although they diminished some at 10 months.

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Profile picture for jimbo12 @jimbo12

@pesquallie

I had no idea that I would lose my muscle mass and thus my mobility.

I stopped Lupron four years ago, and I still have not recovered my previous mobility.

I am 89. So age is probably the reason.

Wish you a fast recovery from the side effects,

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@jimbo12
Did the side effects diminish at all in the four years. Mine have diminished some after 11 months. Maybe ADT's should not be prescribed if you are over 80.

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Profile picture for guybe @guybe

@pesquallie For hot flashes at night, don't wear pajamas to bed. When the flash comes on, toss any covers and lay there spreadeagled under a ceiling fan. Expose your crotch, armpits, wrists, and ankles, all of which are important for cooling. And sweat is your friend, as long as you let it work to cool you under the breeze from the fan. If you don't have a ceiling fan in the bedroom, get one. That investment will pay off richly during your time on ADT.

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@guybe
I agree, actually even stand-up big fan works too, especially one that is in the shape of a column. My hubby luckily still has no side effects but my whole life I felt "hot" (not to mention during menopause) so we sleep with AC on and columnar fan near bed - it is a lifesaver. I am covered only by flat sheet during summer months - easy to uncover in a sec.

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Profile picture for bonjas @bonjas

Oh on the other note Eligard makes your sex drive to zero you are literally chemically castrated during your treatment period.

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@bonjas

Yes, that is how ADT actually kills and/or controls cancer - no testosterone "allowed". No testosterone = very low or no libido.

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Profile picture for guybe @guybe

@pesquallie For hot flashes at night, don't wear pajamas to bed. When the flash comes on, toss any covers and lay there spreadeagled under a ceiling fan. Expose your crotch, armpits, wrists, and ankles, all of which are important for cooling. And sweat is your friend, as long as you let it work to cool you under the breeze from the fan. If you don't have a ceiling fan in the bedroom, get one. That investment will pay off richly during your time on ADT.

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@guybe

I did all of that but found myself waking up because of being cold when the hot flash went away. I spent the night removing covers and then replacing them 15 minutes later. Same problem during the day when I had to wear a jacket all day in the house and taking it off every time I got a hot flash. The cold spells proved to be worse than the hot flashes which I had 24 hours/day. After 11 months without Lupron the hot flashes are less often and not as bad.

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Profile picture for pesquallie @pesquallie

@jimbo12
Did the side effects diminish at all in the four years. Mine have diminished some after 11 months. Maybe ADT's should not be prescribed if you are over 80.

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@pesquallie

Well, I still cannot walk safely on the sidewalk.
I used to walk 4 - 5 miles a day with cockiness.
I am devastated.

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Profile picture for surftohealth88 @surftohealth88

@bonjas

Yes, that is how ADT actually kills and/or controls cancer - no testosterone "allowed". No testosterone = very low or no libido.

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@surftohealth88

Studies of ADT show that it only helps a small percentage of men, but almost all men have side effects. ADT can extend your life about 15% if you have the correct type of cancer.

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Profile picture for pesquallie @pesquallie

@guybe

I did all of that but found myself waking up because of being cold when the hot flash went away. I spent the night removing covers and then replacing them 15 minutes later. Same problem during the day when I had to wear a jacket all day in the house and taking it off every time I got a hot flash. The cold spells proved to be worse than the hot flashes which I had 24 hours/day. After 11 months without Lupron the hot flashes are less often and not as bad.

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@pesquallie thank for the warning my last shot of Eligard is in January so I have a longer way to go after the last shot the side effects lingers on for 11 months that's almost a year for the side effects to subside ( crap). I just turned 72 in April.

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I've been on Lupron for 12 years (Currently 86) Lupron every 3 mos. Lupron along with Nalutimide for 11 years when it become very obvious that my bones were significantly degrading (Bone Scans), Currentlty on Lupron wiith Xtandi. HOt flashes along with blurred vision in the morning major side effects. My cancer was Gleason 7. Initial Treatment was radiation for 6 weeks - and then nuclear seeds. Ongcologist monitored very closesly and varied nalutimide according to effectiveness. When PSA went down cut the pills in half - when it went back up returned to full pill. When PSA surged one year ago I went on the Xtand which immediatly (one month) cut the PSA to 1/2 ---4 to 2 now. PSA is 0.3 lowest in 10 years.

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