Leuprolide and Insomnia: What Users Say

• Bar...
• Taken for 1 to 6 months
• May 2, 2020

For Prostate Cancer "Diagnosed with prostate cancer in April 2019, had a 6-month Lupron shot in May followed by 45 radiation treatments ending in early September. Went on vacation and able to do 2-3 mile hikes over rough terrain with only a little fatigue. Went in for a second shot in early November and they changed me to Eligard. They said it was virtually the same product. Within 2 weeks, I developed intense pain in my hips that has not gone away. Can hardly walk to the mailbox any longer due to the pain. Dealing with mood swings, minor depression, trouble sleeping, and have gained 30 pounds. Due to go back next Wednesday for another 6-month Eligard shot. Not going to happen."

• Dav...
• Taken for 6 months to 1 year
• September 3, 2018

For Prostate Cancer "I was prescribed Eligard by an oncologist due to a suspicion of prostate cancer. I was told my PSA of 80 was almost a certain indication of prostate cancer. Seven months ago, in February, I was given a three-month injection. Within an hour, I was nauseated. I vomited for three hours. After that, the effects of Eligard began to take effect. Hot flashes, going from sweating to cold within minutes, loss of libido for myself, no sexual satisfaction for my wife. Chest constriction, reduced ability to handle stress, disrupted sleep due to fluctuating temperature. Final comment: I conclude that no man would ever prescribe Eligard to another man if he had taken it himself. It is not a cure for prostate cancer, and it affected my life so negatively that I would never take it again, even if I knew I had cancer, which I don’t. I am writing to the Chief Medical Officer of my province that this drug is a poor choice for any purpose."

• 65...
• Taken for 6 months to 1 year
• November 22, 2015

For Prostate Cancer "I am experiencing the following side effects: Breast enlargement, reduction of size of testicles, complete ED, multiple hot flashes hourly, and a mental fog that prevents clear thinking. These were all expected side effects and came as no surprise. Additional unexpected side effects include: rapid pulse rate, elevated BP, breathlessness, short-term memory loss, extreme and uncontrollable emotional outbursts (uncontrollable crying over minimally emotional issues), and sleep deprivation (1-2 hours total sleep which could account for the emotional issues). Of additional concern are anecdotal statements by others claiming no reduction of any side effects even after years of removal from follow-up injections of Lupron. My concern is great enough to request suspension of this drug, even at the cost of an elevated PSA with a corresponding resurgence of the cancer. I know there are additional drugs I can take to counteract some of these side effects, but I would rather not complicate the situation with even more medication. My PSA stands at 0.3 as of this writing, and I would withdraw my request were it to increase to 4.0, however continued living with this nightmare drug is not my idea of life."

• Nis...
• August 5, 2016

For Prostate Cancer "Diagnosed Stage 4 prostate cancer-July 2012-PSA=8. Radical prostatectomy-October 2012-PSA=0.6. Forty days of radiation-April 2013-PSA=0.1. PSA=0.3-Jan 2015. PSA=1.0-March 2015. First Lupron injection-April 2015-PSA=0.1. Second Lupron injection-Oct 2015-PSA=0.1. Third Lupron injection-April 2016-PSA=0.1. Fourth Lupron injection-Oct 2016-PSA=???. Lupron injections accompanied by daily tablets of Bicalutamide. Side effects: penis shrinkage (afraid it will soon disappear), libido absent, hot flashes, some insomnia, increased neuropathy, some itching, inflammation in hands, extreme fatigue. All side effects manageable-beats being dead-and has allowed me time to tie up loose ends and who knows-I may have years ahead!"

• Lex...
• October 5, 2015

For Endometriosis "Don't do it! I got the 3-month shot 1 month ago and have had these symptoms so far: constant and severe pelvic pain, sharp lower back pain, pain when the bladder is full and when emptying, lots of migraines and headaches, nausea, vomiting, high anxiety, extreme fatigue, very low mood swings, loss of appetite, and insomnia. The worst symptom of all is the severe depression, I have had several thoughts of suicide. I would rather deal with just the pain than all of these together. I was told by my doctor the only symptom I would get is hot flashes, and she had only heard of success stories with this drug, that was a total lie. If you react badly with other birth controls, do not do Lupron, it's a living nightmare!"

• Woo...
• Taken for 6 months to 1 year
• April 9, 2020

For Prostate Cancer "I’m a 66-year-old male who was diagnosed with moderately aggressive prostate cancer with a Gleason score of 8 and PSA of 7.2. I’ve had 2 Lupron injections, which have caused the following side effects: a chemical smell, muscle weakness, hot flashes, fatigue, PSA -"

• Anonymous
• December 27, 2009

For Endometriosis "I just finished my 3-month course of shots. The first two months were not too bad, but the third month has taken its toll on me. I can deal with the hot flashes, but the joint pain has become very intense. The pain is disruptive, where my hands are aching all the time. It keeps me up at nighttime, and then lack of sleep becomes a problem. I wish they would suggest a joint therapy program for you to take if you need it because it's not like you can just call up your doctor and see him right away."

• See...
• Taken for 1 to 6 months
• June 27, 2016

For Endometriosis "I would like to address women who already struggle with depression, insomnia, or mood disorders, like myself. If you're already bad off, don't do this to yourself, it might be the final 'push.' I got the 3-month shot (+add-back), and it made me suicidal. My moods went from extreme anger to sobbing, insomnia, hot flashes, and my left arm kept going numb in daily activities! This went on for a month, at 2 months, I leveled out. Not far into the 3rd month, the hot flashes came back, cold sweats (felt like drug withdrawal), and my pain was back! I went to my OB/GYN 1 week early because of this to find I had grown 11 new painful cysts! It didn't even work, and to stop it is also unpleasant (withdrawals). Worst med decision I ever made! HELL!"

• Pat...
• Taken for 1 to 2 years
• February 7, 2022

For Prostate Cancer "This is an update... I posted last year (2021). I have now had 5 shots of 3 months of Eligard. I only have 3 left to complete the 2-year treatment. I had (have) Stage 3 prostate cancer, it spread to the lymph nodes, but no further (they think!). No surgery since it spread... I had my last (45th) radiation treatment 6/9/21. Back to the Eligard. I was about to stop (after 3) or slow down the injections due to the crappy side effects, but the oncologist talked me into continuing. I am counting the months until I am done. My biggest side effect is bad headaches for several weeks after each injection. Yes, I get the hot flashes, I'm dizzy... sleep sucks, joint pain.... and now my knees are very painful. My PSA did drop from the mid 20s to .06 (almost nothing). That's the good part, I guess. I'm just hoping I can tolerate it all. GOOD LUCK!"

• Har...
• Taken for 6 months to 1 year
• November 21, 2021

For Prostate Cancer "I was given, despite having informed the Radiation Oncologist that I had absolutely no interest in receiving this castrating hormone. He didn't properly convey my wishes, and a VA Urologist ordered it anyway. It's been a complete and utter disaster. I have suffered night sweats, lost muscle mass, increased insomnia, testicular shrinkage, and lost libido. It should be emphasized that I had only intermediate-level prostate cancer after 11 years and, therefore, was not an appropriate candidate for this 'chemical garbage.'"

• Mel...
• September 27, 2018

For Endometriosis "I had severe cervical dysplasia requiring a portion of my cervix to be removed, chronic pain, PCOS, and was diagnosed with severe endometriosis following laparoscopic removal of many adhesions from my uterus and scarring of my ovaries. My OB recommended I do six to nine months of Depot Lupron after my laparoscopy to keep the endo at bay and help reduce scarring. I started out with the one-month shot and felt okay, a little achy, and some hot flashes. I went back to get the three-month shot. I was miserable, but my OB really pushed me to keep going with it. I am on my second three-month shot, and I am not me anymore. I am moody, extremely depressed, my bones hurt, I've gained 20 lbs, I'm fatigued, anxious, have insomnia, headaches, and have had horrible gastrointestinal symptoms. It is ruining my marriage. My work performance has suffered. I am foggy and forgetful. Everything is an effort. I will not be getting the last shot and hope this hasn't caused irreversible damage!"

• Jus...
• Taken for 6 months to 1 year
• May 10, 2017

For Endometriosis "Many years of pain - After exploratory surgery and a part of one ovary taken, then laparoscopic 3 times to get rid of the endo, I thought this was going to be my saving grace! It has ruined my life, and I'm talking well over 20 years ago. If I remember correctly, it was a new drug they were trying at the time. Yes, it stopped my period and pain, but literally jumped from 110 to 140 in one month, had a complete breakdown, first time ever in my life breaking a glass table. Depression and anxiety and anger became my life. I reported all symptoms, even the little ones, such as sweating and not sleeping, hot flashes, etc. So not worth the lasting side effects, depression never went away! Don't use this drug, it took my happiness in life -"

• Sad...
• Taken for 1 to 2 years
• March 14, 2023

For Prostate Cancer "My husband cannot comment, as he died 5 years ago. He was diagnosed with stage 3 prostate cancer. He also had radiation treatments. He suffered from fatigue, depression, and insomnia. Radiation caused damage to the urethra. His prostate-specific antigen (PSA) test was low while on Lupron Depot, but he was miserable and committed suicide. It would have been nice to have an alternative treatment. He didn’t want to live that way."

• Han...
• Taken for 1 to 6 months
• July 25, 2019

For Uterine Fibroids "I’ve been on Lupron Depot for 4 months for heavy bleeding from a fibroid and extreme pain due to endometriosis. It has stopped my uterine heavy bleeding, and I have increased energy from not being anemic any longer. However, I have experienced hair loss, generalized whole body muscle pain and stiffness, as well as hot flashes, extreme jaw tension, teeth grinding at night, and occasional insomnia."

• Fut...
• April 17, 2013

For Endometriosis "I was diagnosed with fibroids twice, an ovarian cyst 8 cm big, and endometriosis. I'm going to take my third dose in two weeks, and I was prescribed this medicine for six months. Pros: after the first injection, no periods! Five months without a period was right up my alley, being I had been bleeding so much for so long, I needed the break. Cons: if you eat salty food or heavy carbs, you feel like you are going to throw up. Hot and cold flashes, sweats, stiff joints, joint pain, headaches, sleeplessness/severe insomnia, dry skin and dry eyes. I could go on, but I'm doing this to rid myself of ongoing bleeding, pain, and infertility. It's worth it to stick it out if it really works, I don't know if it does yet, but I know I'm not bleeding."

• Sha...
• Taken for 6 months to 1 year
• September 20, 2019

For Endometriosis "I had severe endometriosis. I had the kind of pain that makes you blackout. I would bleed all over my chair at work. I wear only black or navy pants. So far, I've taken 3 shots, and thankfully I am pain-free. I have no period. But the hot flashes are HORRIBLE. I'm always hot and tired. I don't remember the last time I had a good night's sleep. I've gone as far as putting ice packs on my bed so that I can sleep for a few hours. I've gained about 35 pounds in 9 months, my hair is thinning, I ache all over, my vision has decreased so much, I seem to forget everything if I don't write it down. I think I got the entire list of side effects, however, that pain before taking Lupron? No way! I literally shake when I think about it. I'll try to manage."

• Anonymous
• November 8, 2009

For Endometriosis "I was very pleased with my Lupron experience. I was on a six-month course and found the first three to four months easy. I did experience hot flashes, mood swings, and slight insomnia. My fifth and sixth months were a little more difficult for me. The hot flashes became a little more apparent, the mood swings more frequent, and my face began to break out. To me, that was the worst. Along with the Lupron, I had a laparoscopy 2 months before the medication, and I started acupuncture treatments about a month before beginning Lupron, which really helped with the side effects. My pain levels before medication were unbearable. I could hardly bring myself to get out of bed. I now notice that my pain level is low if I have any at all."

• ska...
• Taken for 1 to 6 months
• November 8, 2016

For Endometriosis "I got a month shot right when I was about to start my period. Period ended up lasting about 12 days. I was told night sweats and menopausal symptoms would happen, but I did NOT expect the suicidal urges (I've been diagnosed with depression, but it was manageable before this shot), migraines - the worst migraines I've ever experienced in my life, nausea, cankles. I've had to take roughly 5 days off work just in the last 3 weeks, and I may even lose my job. I am so irritable and cannot sleep for the life of me. I wake up at least 30 times a night. I'd rather have my excruciating menstrual cramps than go through this ever again. My body did NOT like this AT ALL!"

• mem...
• Taken for 1 to 6 months
• September 13, 2016

For Endometriosis "Was prescribed Lupron after endo surgery since not all growths could be removed. I was very scared to be taking it after I read about it (I cried in the doctor's office when getting the injection). But I ended up loving it. It stopped my periods and the pain, so my anemia was under control and I had so much energy! As for side effects, there was insomnia (but I was not tired from it, so it was OK) and hot flashes started after about two months - but that was nothing compared to the relief. I only got one 3-month shot, but the positive effects lasted for quite a bit. I hope to get another 3-6 months soon. I know there are risks to this, and everyone reacts differently, so I could not advise anyone to take it or not, but for me it was wonderful."

• Ale...
• August 18, 2017

For Endometriosis "I'm on the 6-month therapy treatment, and I got my 4th injection yesterday. At the beginning, I was getting the hot flashes, which I can deal with, the mood swings. I'd rather deal with that than the terrible belly button pain, bleeding from the navel, and chest pain. I was diagnosed with endo stage 4 about 3 years ago. But now I'm starting to think, 'Is it worth it?' with the insomnia, tiredness, diarrhea, and waking up with migraines."

• Lov...
• Taken for 1 to 6 months
• March 10, 2017

For Uterine Fibroids "I was on Lupron a few years ago. For chronic pain, multiple cysts, I was bedridden a week or two of every month. This injection saved my life back then. I lost coverage, so I stopped. Now I have coverage and decided to try it again... it's not working this time! I'm in pain all the time still. I have trouble sleeping at night or staying asleep, my libido is gone... and I'm in the 4th month of treatment and started bleeding and have really bad pains again... and my hot flashes are back. The first month is the worst! The worst period of my life... but there was no bleeding until now... so I would recommend trying the once-a-month doses first."

• Nic...
• Taken for 1 to 6 months
• February 18, 2020

"I was given Lupron depo for my endometriosis. My husband and I had been having issues having a baby. I was supposed to have 3 shots total. After the first shot, it wrecked me. It messed with my bowels, my period was more painful than ever, body pain, insomnia, and extreme fatigue, one night I had to call 911. My skin was burning from the inside out, and my heart started racing to the point where I could barely breathe, and my heart was palpitating. I refused the next 2 shots. Since then, I've continued to have bone and joint pain, fuzziness, I can't retain thoughts or remember simple words. My teeth became really sensitive. It caused nothing but hardship."

• Fri...
• April 14, 2016

For Endometriosis "I've only had one dose of Lupron; before going on it, I did my research. One side effect is horrible insomnia (which I have). I know not every single change in my body can be blamed on the Lupron. I have endometriosis, and the Lupron basically puts you in a state of menopause. Headaches, insomnia, sweats, and mood swings were very bad the first couple of weeks; now my stomach hurts! So I think I can pick and choose what the medicine is responsible for and what the state of chemical menopause is doing to me."

• klu...
• July 19, 2017

For Prostate Cancer "My experience on this drug mirrors that of Albert Owens. The side effects are truly awful, no energy, no sex, headaches, no sleep. I am either sweating or peeing all night. Deep depression, anxiety, nausea, memory loss, legs swelled, 2 stone weight gain around the middle, no quality of life left. I must agree with burned-out wife also because my wife feels just like her, and it is not nice. I have over another year on this stuff. I am happy for the men it has worked for, bless them, but for myself and others, it can be a nightmare. Take care and good luck to all."

• EC4...
• Taken for 6 months to 1 year
• May 29, 2018

For Endometriosis "I am 25 and received 9 months of injections with Lupron for endometriosis and had a terrible experience with it. First was the symptom flare the first month, which made my pain even worse, and I missed 3 weeks of work out of 4 weeks. Then, even with add-back therapy, I had hot flashes, trouble sleeping, severe pain with sex, and bad acne. And it did nothing to help the pain I was having. I stopped this medication after 9 months, and even now, one year after stopping, I have residual digestive issues and continued vulvodynia, which started when I was on Lupron. Many doctors seem to use this drug as a first-line treatment against endo, but it is brutal and is only a temporary treatment."