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Side effect of Lupron

kiyo profile image
kiyo
16 Replies

We have a quesiton about swelling foot and ankle after Lupron injection and wonder if anyone has had a similar experience.

My husband was just diagnosed with PC back in April, and he is on ADT while waiting for his CK treatment this month. After three-weeks of Lupron injection, he now has a swollen right foot and ankle in the last three days and his BP sometimes runs high. We were recommended to go to ED to have an ultrasound on Friday. They ruled out DVT but had no idea as to why the foot and ankle swollen. He has no history of any issues with his blood pressure, heart, kidney, or liver and is not on any medications except Lupron, although he was on Bicalutamide for two weeks before Lupron to counter the drug-induced T flares.

We would like to know if anyone else has experienced swollen foot/ankle while being on Lupron or bicalutamide and how you dealt with the issue. He was given a 3-mon Lupron injection, so it is our understanding that he cannot change to any other ADTs until August.

Thank you for any information you would share.

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16 Replies
Jaffa_2001 profile image
Jaffa_2001

I have just finished a 6 month course of Lupron and also took Bicalutamide for the first month. I had a few issues during the first month, namely palpitations, raised BP at times, my GP examined me and concluded it was the ADT that was presenting the symptoms.

As time progressed these subsided but I have had joint pain a lot of the time mainly in my right ankle and both knees, plus during the last 3 months after the second 3 month Lupron implant, intense hot flushes mostly at night, general tiredness and lack of stamina.

We all react in different ways to the treatments we have to endure on this journey, so it may well be just another side effect of ADT.

Regards - Brian.

kiyo profile image
kiyo in reply toJaffa_2001

Thank you, Brian, for your response and for sharing your experiences. I am sorry you and many others have to go through these side effects. You are absolutely right that each person will respond to the drug differently. I hope with time my husband's issue will get resolved or get better. Thanks again for sharing!

Yokohama2023 profile image
Yokohama2023

Didn’t experience this ..9 months on Lupron..but some gout so maybe check his uric acid levels .. not sure of his age.. usually 50+ not uncommon .. I’m sure they would have checked this though. Had similar symptoms as Brian mentioned but minus the ankle pain .. just some joint pain ..tiredness hot flashes .. I wish you both the best ..

kiyo profile image
kiyo in reply toYokohama2023

Thank you so much for your reply and for sharing your experiences. My husband also is experiencing hot flashes but so far no joint pain. Will keep our fingers crossed. We too wish you the best luck with your treatment.

PT49 profile image
PT49

I had Gleason 7 (4+3) unfavorable. Began Lupron (6 month shot) a month before SBRT. By the 3rd month was experiencing some pretty severe ankle/foot swelling--most noticeable while sitting for long periods of time while driving. I purchased compression socks which helped a lot. Swelling slowly diminished after 6 months. Now I only wear the compression socks while sitting and driving for long distances. I probably no longer need them but am afraid to go without. My ankles would swell to 3X their normal size. I would recommend, however, seeing a cardiologist to make sure that your ankle swelling is not heart related.

kiyo profile image
kiyo in reply toPT49

Thank you very much for your reply and for sharing your experiences. I am sorry that you too experienced a bad foot/ankle swelling while on Lupron. Several medication references like this one: medlineplus.gov/druginfo/me..., lists swollen feet and anckles as a possible side effect of the drug, They recommend an ultrasound to make sure no DVT. My husband is also wearing a compression sock to help reduce swelling and it seems to help. We keep our fingers crossed that the side effect will subside with time. Thanks again and best wishes with your treatment.

Derf4223 profile image
Derf4223

You may also experience swelling of hands, feet or lower legs (fluid retention). Contact your doctor if these effects are bothersome.

This is from the bottom paragraph on the first page of this document

wnyurology.com/docs/instruc...

I get lower leg swelling that is moderate. Periodic elevation of affected legs can help. Weight management may help -- but that is very difficult on Lupron.

kiyo profile image
kiyo in reply toDerf4223

Thanks for sharing the information and for sharing your experience. I hope your side effect is getting better. My husband went to his new MO and we asked whether Lupron could cause the swelling. The MO discounted saying its was "highly unlikely" because he never had patients ankle/foot swollen while on Lupron and my husband was on Lupron only three weeks. I am not sure he is absolutely correct because you and several other patients here had experienced this SE, which is described as common in drug references. And each person can respond to hormone changes differently. Anyway, it is frutrating. We just hope the swelling will get better with time. Wish you the best with your treatment and thanks again for sharing the info.

j-o-h-n profile image
j-o-h-n

Been on Lupron for around 15 years....... no such issue(s). But I do have peripheral neuropathy and it's getting a bit worse as time goes by. (sound like the song from a movie).

p.s. Good idea to update his bio.

Good Luck, Good Health and Good Humor.

j-o-h-n

kiyo profile image
kiyo in reply toj-o-h-n

Thank you, j-o-h-n for sharing. Sorry you are experiencing peripheral neuropathy. I hope you will get better with this particular SE. Best luck with your treatment.

j-o-h-n profile image
j-o-h-n in reply tokiyo

Thank you. I think I have the whole thing beat....cause my wife has a great suggestion for me..... "she suggested I learn how to walk on my hands".....The moral of my dilemma, "never marry a spouse who's funnier than you"....

Good Luck, Good Health and Good Humor.

j-o-h-n

kiyo profile image
kiyo in reply toj-o-h-n

I like your wife's suggestion and I bet it is hard to follow :)

j-o-h-n profile image
j-o-h-n in reply tokiyo

Yep indeed and it's very dangerous every time she makes me applaud her wit.... Gotta hand it to her though............... But I can't complain cause with my new balancing act I'll be leaving her to join the circus.....

Good Luck, Good Health and Good Humor.

j-o-h-n

Don_1213 profile image
Don_1213

I'll just comment - IMHO (and that's all it is..) any man on ADT should visit a cardiologist/vascular MD. ADT is known to cause issues... better to catch them early.

kiyo profile image
kiyo in reply toDon_1213

I absolutely agree with you. Before being put on ADT, it should be the standard to have some baseline tests, such as cardio, BMP, bone desity, T, PSA, etc. Some MOs or urologists are just too casual, in my opinion, when starting their patients on an ADT treatment. My husband does not take any medications prior to Lupron and he tends to be very sensitive to drugs. So we wanted to starting low on Lupron with one-month injection and so we could see how he could react. His doctor's office refused saying 3-month shot was all they got. So he had no choice but having a 3-mon injection. Also, when we went to see the MO, he did not believe the swollen ankle foot was related to Lupron, not to mention ordering any tests. We were very disappinted. Anyway, thank for your comment.

Don_1213 profile image
Don_1213 in reply tokiyo

Fire your MO. I fired 2 urologists before I found one who actually is competent and looks at his patients as humans, not the next payment on the rent the medical conglomerate that runs the practice wants.

Dunno where you are - I've found much better MD's going into the city (NYC) to Columbia/Presbyterian/Weill/Cornell (whew.. lot of colleges and medical schools there). And when I need another type of MD - they provide great recommendations.

Both of my original urologists had no idea why they should be monitoring T at the same time as PSA. It never seemed to come to them that there might be a connection between the two. My first NYC MD was my medical oncologist who has always included T, and a general blood scan for possible kidney and liver issues.

What do you call the bottom of the rankings of medical school graduates? Doctor. There are good ones out there. Sometimes a local support group is the place to find them (from other patients in the area.) And I've had good luck with a major medical center associated with two highly ranked medical schools. The MD's I've had typically keep a limited number of patients since a lot of their time is spent teaching or in research, so it's good to become the patient of one of them, and then ask them for referrals - which they can cut through red-tape to get for you.

Good luck!

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