Help! I Have “Lupron Brain”

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Is there a patient-medic in the house??

I think I’m suffering from a form of dementia called “Lupron Brain.” This is a kind of mental fog that some men on hormone therapy complain about. I thought women were immune, but I guess I was wrong. I recognize the symptoms.

Here are some actual quotes from men suffering from “Lupron Brain”:

* I can’t concentrate

* I can’t multitask

* I’ve lost my organizational ability

* I’ve lost my creative ability

* My short-term memory is impaired

* I lost my car keys

* I don’t remember where I parked the car

* I have forgotten how to drive a car

The medical profession, as usual, lags behind the patient community. They have yet to recognize “Lupron’s” as a legitimate illness. So I have to turn to a patient-advocate named Ralph (pcainz.org) for a possible explanation. *Note, I am not endorsing this theory, I know nothing about the subject.*

“Some experts believe that a decline in hormone concentrations (both in men and women) might cause alterations in brain neurotransmitters, etc.”

So there: Women get “Lupron Brain,” too. I’m not yet menopausal, but maybe the hormones are starting to peter out and are messing with my neurotransmitters.

“Neurotransmitters” are the “messengers” of the brain, as any self-respecting person who’s ever taken Prozac ought to know. So if taking Lupron “alters” them, it’s not hard to see how there could be cognitive problems. To put it simply, your mail isn’t being delivered. Or it’s being delivered to the wrong address. So it’s not all in the head.

Or is it?

May insightful posters have noted that “Lupron Brain” mimics other common syndromes such as anxiety and depression, which are not uncommon in the PC community. So it’s important for any guy who is not feeling like himself mentally (or his partner) to get a good psychiatric evaluation to rule out other causes.

I was reading a post in a PC newsgroup yesterday by a friend who who has advanced disease and was feeling very down. I was impressed with the sentiment in the responses, but was also gratified to see that men are talking to other men about their psychotherapy and psychotropic medications.

So, maybe one more thing has come out of the closet.

If you want to know my gut feeling — I think “Lupron Brain” is real, but that it coexists with depression and anxiety, and it’s hard to tell which is causing the problem.

Either way, ask your doctors. There are things that can be done, if not to cure the problem, than to alleviate the symptoms.

Take care.

By | 2017-10-19T10:59:21+00:00 August 20th, 2007|Advanced Disease, Drug Treatments, Healing the Mind|23 Comments

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23 Comments

  1. Barry January 29, 2008 at 1:36 pm

    I am a 56 year old male with Prostate Cancer and have been on Lupron for
    three years. I have have all the symptoms you write about. I have seen it
    written that it is similiar to depression and anxiety, common with PC.
    I do not believe I am depressed. I have a great faith in a Higher Power and have
    had a wonderful journey in the world of cancer. No, I am not glad I have it.
    The Lupron has kept me alive and for that I am grateful. I just have to say
    the side effects are more than led to believe: loss of muscle mass, extended
    belly, sleep disorder, breast growth, hot flashes (which were cured by
    accupuncture) and Lupron Brain. It is real!!

  2. erica June 23, 2008 at 7:02 pm

    i’m on lupron for endometriosis and i feel like i’m losing my damn mind. i’m so glad you gave it a term i can use!

  3. B.Kay November 6, 2008 at 9:47 pm

    My husband has been on Lupron for four years for PC and he is not the man I married. He definitely has “Lupron brain” is very aggressive and not himself. Has anyone else experienced violent dreams with this medication? His doctor does not agree that Lupron has caused any of these effects.

  4. Nikko July 31, 2009 at 8:54 pm

    It’s a relief to find that I’m not imagining or exaggerating the Lupron side effects! I’m living post radiation prostate cancer with lupron, suggested for 3 years. HELP! Has anyone found healthy ways to deal with the mental issues and the fatique? Coffee and sugar are obviously not what my body needs.
    Any suggestions or directions, website etc would be greatly appreciated. Doctors totally minimize or brush of the side effects like they are nothing!
    Blessings from Hawai’i island.

  5. Laura Powers August 5, 2009 at 8:08 pm

    To Poster Barry:

    How often did you receive acupuncture?

  6. Sharon Christensen December 25, 2009 at 7:53 pm

    My husband, a retired Bank CEO (twice) and CFO who turned his banks and restaurants from “Red” to “Black,” had extremely well organized files regarding banking, bills, etc. dating to approximately 3 months after beginning Lupron injections for prostate cancer. From this time on his files became “suddenly” disorganized . . . . phone bills, TV, water bills, etc mixed together and out of date order. Also, he began increasingly to “forget” things, events, etc. Said “never happened.” Also, he began to slump as never before, leg and upper arm muscles deteriorated rapidly, put fat on mid-section.
    I wrote describing all this to his urologist, and asked for mitigation, a balanced treatment. He sent me a cursory 1 sentence note to the effect I didn’t know anything about it.
    Only after an accident clearly caused by cognitive disfunction, did the urologist begin testosterone injections. Husband began to improve immediately, but the progress is up and down.
    Does anyone have any positive experience with effective reversal of Lupron effects?

  7. Susan Ritter March 30, 2010 at 9:06 pm

    These posts are very concerning. My Husband has been on Lupron for 2 yrs and also received 44 radiation treatments during that time. He received his last injection in December and is still experiencing all of the side effects you are talking about. His muscles are very weak and painful and the fatique has not subsided at all and has “Lupron brain”.
    What concerns me is nobody has any answers or suggestions. How long will the side effects last? Are they reversible?
    Did the acupuncture only help the hotflashs?
    Any help would be greatly appreciated.

  8. Leah March 31, 2010 at 3:27 pm

    Dear Susan,

    I’m sorry that you and your husband are in this difficult situation. I would suggest that you ask these questions of my colleague, Joel Nowak, who writes the advanced cancer blog for Malecare (advancedcancerblog.net). He also runs an online support group for advanced PC. You can e-mail Joel @ Joel@malecare.com.

    I wish you the best.

    Leah

  9. Trenton October 19, 2010 at 3:43 am

    I started on Lucrin Mar 2007. We were informed at the start that weight gain and muscle loss would probably be a side effect. The staff at the hospital administering my case were wonderful and the Oncolgist advised at the beginning to seek out a good pysche straight away. His nurse also advised my wife to accompany me on those visits as it could be a rough time on her.

    The cancer has reappeared and I am back on hormone treatment. I don’t handle the side effects well and “melt downs” occur.

    I participated in a gym exercise program for research and that is the best thing I have done. I have been going to the gym twice a week under supervison with big weghts for 15 months and my muscle content (measured) has remained constant and my strength has been maintained.

    I play gof twice a week.

    The biggest plus is that the endorphins produced by the exercise are mood changing for the better.

  10. Ricky July 8, 2011 at 1:53 pm

    Hi Guys i am a new kid on the block. Surgey

  11. al September 29, 2011 at 11:39 am

    what tragic stories. for men 65 and over, scientific research indicates few if any lives are saved by prostate cancer surgery or radiation. prostate cancer treatment harms a substantial number of men and provides no life saving benefit. for the truly unfortunate men with cancer that’s incurable, measures like lupron with horrific side effects seem to be the only approach medicine has to offer. my heart goes out to all the guys suffering from either the side effects of treatment or side effects of the medicines used to prolong life.

  12. Don H. November 17, 2011 at 7:59 am

    I am not aware of any memory side effects from the two Lupron shots I received but maybe I forgot? I went through Proton Therapy for my Prostate Cancer and it worked. Unfortunately, the doctors recommended a Lupron shot to shrink my prostate. My last test results were; PSA “<.1" and Testerone "0". Although I'm 66 years old and a widower of 10 years I still had an active sex life. Not anymore. My side effects from Lupron are: hot flashes, a lot of weight gain, mini boobs, chest pain on occasion, easily fatigued and the worst part… turning into a woman. Everything down there has shrunk to practically nothing and is only for urination. In my mind I want what I had before, sexually, but no matter what happens there is no such thing as arousal. In general, life for me has stopped and if any one tells me I need another shot… forget it. I don't care anymore. I would rather die and be with my wife than go through life this way.

  13. Bob Horner November 18, 2011 at 4:41 pm

    I’ve had all the symptoms too. I had pencil beam proton therapy for prostate cancer. It is four months since my last – truly my last – Lupron shot. I had 6 regular injections as part of my treatment, with the last one August 8. The side effects are just now starting to go. I actually had two full days with a single hot flash! I’m believing the side effects are temporary. And yes, Lupron Brain is a good name for it. I’ve used the excuse for every “brain fade” I’ve had in the past year.

  14. Micheal Knie November 19, 2011 at 4:09 am

    very good explanation at all, with a discussion that talks directly to the core, this is very inspiring to me.

  15. Laurie Overton January 13, 2012 at 7:17 pm

    Hello to All the Brave Warriors on this site!
    My husband made the (brave) decision to end his Lupron treatment. Last June was his final injection. We shared his (our) decision with the Team Inspire website and were amazed by all the comments. So many people were intrigued by Rommie’s decision. It wasn’t made overnight, as everyone knows those side effects have taken a huge toll on his body. We are not advocating this decision for anyone else, this is ours, alone. I have to say, just watching my husband smile again, and regain his desires for everything, not just intimacy, but playing his guitar, laughing and feeling part of life again, is priceless. As a spouse, it is wonderful. There is hope in his treatment, and for now it’s diet, and exercise. Frankly, we just want to be together, enjoy life and hold one another for as long as we have. The thought of him living such a sub standard life, with such gross side effects, just to keep his T levels lower, was such a contradiction for being free from cancer, when all along the treatments keep you less healthy. He did 42 treatments of radiation and Lupron. If the radiation didn’t do enough to be worried over, lupron just about wore him down completely. Immune system impaired and isn’t that what a cancer patient needs to fight this darn thing? Anemia, foggy thinking, disorientation, growing breasts, lack of sexual desire, loss of muscle, osteoporosis, threat of stroke, heart attack, increased cholesterol, visual disturbances, severe fatigue and depression. One night Rommie held me and asked: Am I selfish for wanting my life back? No, I told him, you are human and you have the right to question your treatments. Hormone therapy won’t cure prostate cancer, he is stage 3 Gleason 8. We were told he had an aggressive, growing cancer. So now what? We have new bicycles, he plays guitar with a new group of guys, we are trying to put together a Band of PC survivors, and we are sexual again. There is hope in his eyes again, and I love that look, something we have missed for a very long time. For however long we have together, I couldn’t be happier with where we are now. Tomorrow is a new day. God Bless you all and our thoughts and love go out to you too. Love Laurie and Rommie.

  16. Sal February 1, 2012 at 2:31 am

    I feel like my husband and I are newbies at this, given his diagnosis was just two months ago. He had no symptoms other than a rising PSA. Finding out he has PCa was shock, though perhaps not altogether a total surprise; what was the real kick in the gut was being told he had a VERY high grade, aggressive type of PCa (Gleason 10, w/about 80% involvement). He was told he didn’t have the luxury of taking all the time he might want to decide on treatment.

    Hubby is 72, and has many complicating conditions (COPD& diabetes among them). He’s decided on IMRT & hormone therapy. He just started the Caspdex and will get his first Lipton shot next week. I am worried about the side effects.

    Does anyone have any figures on the percentage of men who suffer serious cognitive/emotional or other brain related side effects

    Thanks!

  17. Donna February 28, 2012 at 5:07 pm

    I am thrilled that I found this site! My husband gained weight, seems to not remember things that I know he did know, and has extreme muscle weakness.
    He needs to hold on to something to step up. We had to put some rails in our yard where the steps are. If he ends up on the floor, he cannot get up. With a chair and a huge effort, he can lift himself by leaning on the chair with his upper body.
    He is grumpier to me than he has ever been. I felt that some stretching or exercise would at least maintain the muscle that he has, but he refuses, I am so sad that he is not even trying. He works hard and long as a physician everyday and takes overtime when it is available. His prostate cancer was outside the prostate. He was radiated at UCSF and had a series of Lupron shots. Shouldn’t we all be reporting these side effects to the FDA? The treatment ended about 4 years ago. How can we read about it if we don’t report it? Someone needs to research and study these affects. Please tell me if there are other sites that deal with this issue.

  18. Hollis Kline August 12, 2012 at 1:46 pm

    I’ve been on and off lupron for 11 years now. I get pretty sick for the 5 days after my 3 month shot…..I’m fatigued and use dexadrine, ritalin, espresso and 5 hr energy drinks to help the fatigue. I take very low dose effexor for the hot flashes (it cuts them to less than 1/2) I have gained weight and to try and work out is impossible…..I can walk the dog for a ways very slowly and that’s about it…..luckily I can still ride my Harley…..
    After being on it for a long period you lose all your body hair…..gain weight and lose muscle…..get breasts……lose your mental abilities. (I had to retire from the tax business- I just couldn’t do the work any more)……and you have to watch the depression…..gratitude fights it best….
    I’m now on Lupron and dexamethasone and my psa is steady at 40. down from 66 about 7 months ago. Originally it was 72 when I started this in 2001 with a gleason of 7. so 11 years and counting but sometimes it really really sucks.

  19. Chris for Robert December 6, 2012 at 6:09 pm

    Hello. I’m french. My father took Lupron (Enantone in french) for 1,5 years ! Very quickly, my father became strange, very tired, with a very white face. Before this, he used to make a lot of things, he was full of energy. And after one year of lupron’s treatment, he started to have Alzheimer disease. All the symptoms you discribed, my father had it. He was a very good cars driver, and stopped to drive after several months of Lupron’s treatment.

  20. Alan Mohr December 6, 2012 at 7:43 pm

    I am 77 years old and have been on lupron shots 5 years. I had a radical prostatectomy almost 12 years ago and a few months later had 34 radiation treatments. I did pretty good for almost 7 years and then my PSA began going up again. I began 3 month lupron injections for a year and then went a year without any.After the year I had to begin the shots again and now am getting 6 month injections. I have all the side effects mentioned. I exercise and brisk walk, watch my diet, but still gain weight easily and still have all the above mentioned side effects.

    Because of the radiation I ended up with severe hematuria approximately 8 years after the treatments. After 4 ER visits I had 40 Hyperbaric Oxygen treatments. None of this was as bad as the side effects of the lupron shots. Are any of you on the 6 month shots? Are your side effects including lupron brain worse for a few weeks after the injection? Thanks.

  21. Homer Vasels April 6, 2013 at 4:55 pm

    diagnosed with prostate bone metastases two months ago and have been
    on Casodex for six weeks. Had my first Lupron shot Monday and by
    Saturday was up five pounds with no change in eating habits. Ocasional sweats mostly through my scalp, fatigue, soreness, but so far nothing else. I am worried about the weight gain as I am overweight to begin with. Any ideas?
    O.F. from Corona

  22. kenneth Seaton D.Sc December 2, 2013 at 9:52 am

    My 40 yr study in JNMA,v93,490-93 “Albumin Concentration Controls Cancer” and my NHF study “Understanding and Preventing Alzheimer’s” 2012 may answer the “Brain Fog” that surronds use of Lupron Depot. My findings uncovers that serum albumin levels often fall to less than 40g/L (4%) due to lupron depot and that leads to not enough purified super serum albumin in the CSF to clean the brain of the toxic wastes such as Amyloid and tau also maintains optimal mental potential. Remember that serum albumin is the “Life Factor” and levels higher than 47g/L are needed to clean and optimize the amazing computer we call the human brain. Hygiene more than diet controls serum albumin levels because it prevents infections, inflammation and stress. See “Breaking the Devil’s Circle” 1989.

  23. Kim May 30, 2017 at 11:41 am

    Though my 13 yr. old son does not have PC, he was given Lupron for precocious puberty. His symptoms are identical to those described in this website. His injections were for 1.5 years and his side effects continue though they were given nearly three years ago. His depression is worsening as is his cognitive ability. What have we don in allowing our child to be given this drug?

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