I've been struggling to maintain my mental health since my last elligard injection. Details in my reply to No_stone_unturned's post on "Does mind over matter work?"
SandyBear 2023 posted "Do you also have these symptoms?" These two posts, along with my own recent experience led me to do a quick search on the literature on lueprolide induced psychosis. I don't have access to any academic search engines, but my search on Google returned several results. Many of these are rehashings of the same cases, but still there is some literature to support the validity of our SE's. Unlike many of you, I don't claim to be able to establish the validity of the studies, but I though many of you might be interested.
We describe the case of a 62-year-old man without previous psychiatric history or mood disorder diagnosed in October 2010 with prostate cancer, which metastasized to the bone. Androgen deprivation therapy was administered monthly in the form of leuprolide acetate (3.75 mg) subcutaneous injections. After the second dosage, the patient gradually became increasingly elated, expressive, hyperactive, and increasingly talkative about his work and future plans. A decreased need for sleep also developed.
The patient’s medical history revealed no drug abuse or alcohol consumption until that time. Laboratory examinations showed normal thyroid and adrenal function. A toxicology screen was negative for illegal substances. However, impaired liver function was revealed, and may have been caused by hepatitis C. Brain magnetic resonance imaging demonstrated atrophy, but no obvious brain or skull metastases. Electroencephalography revealed no overt abnormalities; however, hypersomnolent tendencies were noted.
Upon admission, oral neuroleptic drug treatment was started (risperidone and haloperidol) under the diagnosis of substance-induced acute manic episode, according to the criteria of the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders. Manic symptoms subsided 1 week after administration of this treatment. One month after discharge, the patient’s overall good condition allowed discontinuation of leuprolide acetate. Follow-up revealed no psychiatric symptoms requiring hospitalization. Risperidone for controlling symptoms was also discontinued."
Excerpt Two
"Case report.
Mr A, a 65-year-old white man, was brought into the emergency department by the police after they were called by his wife. She reported that he was extremely agitated, shouting profanities, threatening her, and accusing her of being schizophrenic. Over the last 3 to 4 weeks, he had been progressively sleeping less, only sleeping 1 to 2 hours per night immediately prior to admission. He had persecutory delusions regarding the Mafia and FBI. He was hyperverbal, had pressured speech, and was repeatedly quoting the Bible. Over the past several weeks, he had been displaying bizarre behavior, such as impulsively buying objects he had no use for and excessively spending money. He had also been irritable with his wife and using profanity, which was unusual behavior for him. At the time of admission, an accurate history could not be obtained from the patient, and therefore the majority of the information was obtained from his spouse.
Laboratory test results on admission, including thyroid panel, basic metabolic panel, complete blood count, and urinalysis, were all within normal limits, except the patient’s red blood cell count (RBC) was 3.88 M/mm3 (normal: 4.00-5.30 M/mm3) and his hematocrit was 35.5% (normal: 38.0%-46.0%). The rapid plasma reagin test result was negative. A toxicology screen was negative for illegal substances. The patient’s blood alcohol level was undetectable, and neurologic examination results were unremarkable.
When Mr A arrived in the emergency department, he was agitated and combative. He struck a nurse and threatened to hurt other staff members. At this time, the patient had to be placed in 4-point restraints. He also received haloperidol 5 mg intramuscularly. He was then involuntarily committed to the psychiatric inpatient unit.
The patient’s past medical history was significant for prostate cancer, and he had received radiation seed implants 4 years before. However, 3 months prior to this admission, his prostate-specific antigen levels became elevated. Upon the recommendation of his physician, the patient received leuprolide 45 mg subcutaneously approximately 2 months prior to this admission; this dose is intended to be administered once every 6 months. His past medical history was otherwise unremarkable. The patient had no history of psychiatric illness. His wife reported that his current behavior was an extreme deviation from his normal behavior. She reported no other recent medication changes. There was no evidence of metastasis."
I would welcome any input, insight, advice, etc. from you, my experienced colleagues.
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Carlosbach
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Thats me......my onc said he never saw anyone transform so quickly ....right in front of him.....i kno many gace no problem.....i already gave adhd...this shit takes it to another level...along with ..anxiety....and what i call...living only in the present....mindwise as evrything happens it does not stick....recalling past stuff from tweny year np....but i can goto grandaughters bday party yesterday...and not remember....the adt is destructive...my opinion
I'm sorry to hear that you also are stuck in this mental swamp. The memory issues sound particularly troubling. I hear your despair and you have my prayers and my empathy.
Thanks to the kindness of many on this forum, I feel like I have a plan for heading this off at the pass. My priority is to get E2 patches, but I'm going to start with a topical cream until my docs come through with the good stuff.
Had to stop my ADHD meds, because in combination with Orgovyx and other stressors in my life on top of PCA, my BP shot up. Makes it darn hard to function at work. My wife has figured out how to gently question me about whether I'm doing or not doing something because of my ADHD/ADT combo or am I really pissed at her.
I can definitely relate. My wife has tolerated a lot of crap from me during this horrible couple of months. I’m lucky that she has been willing to ride this out with me.
Firmagon (degarelix injections) didn't seem to . . . I'll say upset me, since I can't seem to pull a better word from my all too often inaccessible vocabulary . . . as much as Eligard did. Same for the Orgovyx that I'm on now. Could be aided by quite a bit of therapy between and during my two rounds of ADT: ADHD (executive functioning) therapy, individual therapy, marriage counseling, sex therapy. Hopefully you'll notice a beneficial difference when you switch medications. There's still some Hallmark movie effect -- what my wife and I call the tears that I can have with both sad and happy feelings -- but the action energy to get them started seems to be a bit higher.
thanks for the encouragement. I’m hopeful. The SEs from lueprolide have become intolerable, so at this point I have optimistic hopes for the promised med change
its often difficult to remember …… when the bathtub overflows and you are up to your armpits in rubber duckies ( wtf ) , but we - most of us aPCa croakers have two nasty psychological things going on at the same time. First and foremost is probably living with our death looming in our face …. Second is obviously the harsh mental interactions between our meds and our brains. Xtandi can even can directly cross the blood brain barrier and cause transient ischemic attacks and or worse.
Facing death is a nasty downer in case you didn’t know that ( yayahahahaya ) … there is absolutely “ no one “ that realization won’t drag down. Secondly is the drugs end of things and boy howdy there can be a bunch of those , more fun than a sack of snakes. ADT, Xtandi, opiates, benzos woooohooo ride’em cowboy.
Well having stated the droid obvious , I guess what I’m saying is that you have strong reasons for instability…. and wether we admit it up front or not , the rest of us are $hitting ourselves as well. You are facing your bucket of worms better than most of the rest of us ….I think that it’s better to get those up top instead of trying to hide them ( always unsuccessfully ) in our subconscious.
We’re here with you brother … I know it doesn’t help much but lots of us hear you and are drenched in the same BS you are having. We “ get it “ for what that’s worth. My foremost thought is for you to get back to your pcp or oncologist and get that referral to the people that can definitely help you. There are experienced psyc staff there that are very experienced with liver disease, breast cancer, lung cancer etc. …. all croakers they help every day …and they can help you a lot , there are so many new modern meds, there is nearly always one that works for you. The squeaky wheel gets the grease buddy, get in there and make some noise. The care is available, make damn sure they know that YOU want it NOW.
Me and the doc will drive over there and get you ….and go look at / photograph, and piss on , some spring flowers … yayahahahaya yayahahahaya you are a tough hombre buddy , kick this stuff in the a$$ , seriously.
Thanks to the caring brothers on this site, I have hope. And, maybe just as importantly, I feel validated by the chats and replies from the caring folks on this forum.
PS - Let me know your ETA, I'll have some Kia-Ora chilled for you as long as you promise not to break the bottle (valued at $12.50)
Your too much kal....your honesty in the face of adversity is commendable...i believe your a canditade for the bronze walnut......will expect to see you in the great gig in the sky...should be fun..Bw
lol …. More like the bronze BBs. It is what it is brother … maybe all of us can meet up and do some kewl hereafter stuff yayahahahaya. Love ya brother … ❤️❤️❤️
So you have come to the very good and valid insight that you have a form of drug induced psychosis from leuprolide (Lupron and Eligard, etc. LHRH agonists.). So you should never be given these again and list them as medical “allergies “.
It may not be just the lack of testosterone, but off target drug effects, which are common. So stopping the causative drug can be expected to clear it all up.
So other avenues of HT might be okay for you such as the trial of topical estradiol you mention (which also acts by suppressing LHRH). Other alternatives that might be considered are degarelix or oral Orgovyx, both LHRH antagonists. Or surgical castration if your situation is one expecting to need ADT for life. (Shudder. For me that would be a bag of snakes. But a good choice for others.)
Best of luck. Be safe, we’ll and happy Carlosbach. MB
No two people are the same. Color me skeptical but hey, anything could happen. I have had pre-existing depression which I think has not been made worse and no other psychological symptoms can be attributed to Lupron, IMHO.
Importantly, if you're newly diagnosed and talking to physicians about ADT, don't even consider psychosis as a possibility. Get the treatment that has the best chance of controlling the cancer. If there are adverse side effects of any kind, discuss with your doctor.
Thanks Steve. I've been on Lueprolide and Zytiga since Oct 2020. Initially I just suffered fatigue and hot flashes, but with each injection my SE's are intensifying. I'm still struggling (2 months after my last injection) with anxiety, control of my thoughts, feelings and my ability to get anything done. The mental and emotions SE's are getting to an intolerable state.
This is not for you the typical SE's it seems. My first MO used to say "complain, dont suck it up, complain".
You are in that situation.
Glad the E2 is coming. More so though I wonder about your MO? Have you been able to communicate this thru your patient portal. This may take what Brother Kal spoke of or a change in standard and or 2nd gen ADT.
Since you already have the Lupron in you the E2 I am guessing will be tried as a add on to maybe decrease cognitive effects with the added benefit of less bone density loss. But I hope your MO has some input/solutions that will give you quicker relief.
Thanks Camps, I've been in a revolving door of MO's with Kaiser. I have a new one, and I don't have great confidence in him, but when I'm well I'm persistent about getting heard and getting the treatment I feel I need. My previous MO got to where he would almost sigh when I would hand him my list of questions at the start of an appointment (hmm, wonder if that has anything to do with the MO churn?, Na!) I've gone outside of Kaiser before to get what I need, and I plan to continue to push until I get the support I need.
This gets back to QOL for me. Some brain fog is fine with me as we’ll loss of muscle and heck loss of sex drive not an issue. But to go into a deep depression and treat the people badly that I love and they love me I don’t need the fricken drugs or a life. There are things worst than death in my book.
For now I will smell that rose and eat what I want whenever I want and travel wherever I want. I have 2 extremely smart Border Collies and they will let me know if it’s time to end this ride. They know emotions better than any doctor. For now we adore each other. The way it should be. Cheers NA 🍻
Thanks Moose. I agree that when a reasonalbe QOL isn't achievable, then the treatment isn't worth it. A classic case of the cure being more problematic than the disease. Fortunately, I have received some sage advice in chats and replies to my posts, from folks that I respect. Hopefully, I will be able to find some resolution, because I love life, my family and this amazing world. If not, I'm prepared eject.
The decrease in testosterone should be definitely be ruled out as the proximate cause of these psychotic symptoms. Having a physical castration would forever lower the testosterone unless it was administered for life if that was the cause. Hormone levels (read no T) caused my severe depression for 11 months after a "3 month" injection of Eligard. There is always the possibility that the Eligard is causing some other neurological issues unrelated to zero or low T but there isn't any literature that I am aware of which would support that.
Hey CB yeah ! when it looked like I wasn’t going to make it my lady doctor friend told me “. None of us are going to make it out of this alive “ ! She was talking in general ,about everyone . But It’s true . I thought it was a little harsh for a doctor to say to a newly dxed dude . 😳
Hi Carlos, yes I did, and I am continuing to use an E2 transdermal patch. My MO refused to do it himself but agreed on the condition I found an endocrinologist to prescribe it. She had never done so before but was persuaded by some of the studies. While a number of men on here are taking doses of 0.1 twice weekly, she insisted on starting me at the lowest dose of 0.025 twice weekly. My E2 barely budged. After 3 mos, she agreed to increase the dose to 0.050 twice weekly. My E2 increased, but just slightly, and stayed well below normal. So, she agreed to increase to 0.075 twice weekly. I just had E2 tested, and it is now normal at 23 ! I don't feel any different, but considering the vertebrae collapse last year, I feel much better about my bone health situation now that I am taking Prolia and E2. I regret that I had to suffer that injury before my MO started to address the bone health issue. The E2 has made my nipples very sensitive, but has so far not enlarged my breast tissue.
Awesome update. Thanks for intel. I may have to hunt for an Endocrinologist next if I cannot persuade my MO. Great idea
Hey Carlos, I flipped my wig on double adt . I was angry at self . How could I, the king of the forest be so fd up at just 53 ? I whined , yelled and was suicidal for three years . How many go by suicide ? I’m thinking more than we know .. They don’t show up here . Keep rolling !
I remember you posting on the battle you had with ADT. During the worst of the last 2 months I told my wife that while I hadn't gone crazy yet, I could see it clearly from where I was, and there were a couple of days I wouldn't of had to stretch very far to touch it.
Doing a lot better now, and I'm looking forward to changing meds at the end of May. Some anxiety because the lupron and eligard really knocked the cancer, but fingers crossed that the Firmagon works as well
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