What are the Un-Complicated ADHT Lupron Depot Top Ten side effects?
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My 2nd time thru this. Re-start 9/10.
1st time was 2008-2012; when my Cardiac Health was in shambles and I didn’t even know it. Or didn’t care.
Just the human and or mental side effects please. I think I understand them.
Am I different?
Depotdoug
Top 10, as noted for the 3-month depot:
Hot flashes 59%
Testicular atrophy 20%
General Pain 27%
Gastrointestinal disorders 17%
Urinary disorders 15%
Injection site reaction 14%
Joint disorders 12%
Neuromuscular disorders 10%
Skin reaction 9%
Insomnia/sleep disorders 9%
A 4 mo depot trial also listed these as occurring in more than 10% of patients:
Asthenia (Fatigue) 12%
Flu syndrome 12%
Headache 10%
Well. Shouldn’t say but I thought energy loss(libido) was up in the top 5.
70 days in to 1st 3months injection. Only #2 a lesser extent joint stiffness. Factor in Exercising twice(2X) daily could correlate to stiff muscle/joints.
Am I expecting the worst SE’s way too early, Tall_Allen?
They do not seem to include any psychological symptoms - libido loss, mood swings or loss of mental accuity. Asthenia - fatigue is included.
Time to research ‘asthenia’ and ‘libido’. Libido has to do
With male energy?
Yes, libido is sex drive, but also the energy that drives us to be more competitive and aggressive.
I like competitive feeling.
I thought at 53 that libido loss would be number one .almost five years later So many symptoms that libido falls to the bottom of the list ..
Not sure if I will be able to detect most of these because I have Lupus and the majority of these issues (hot flashes, joint disorders, joint and muscle pain, fatigue, memory issues and neurologicial issues, skin rashes, sleep problems) are already part of my daily life. So 15 days in I have not noticed any obvious changes. I am most concerned about CV issues and appreciate the heads up from those who have experienced them.
I am wondering for most of you, how long it was before you really noticed changes and were they gradual, or did they come on suddenly.
? Not yet. Got an unexpected headache today maybe that’s a start.
In my personal experience #1. Sarcopenia -osteopenia..muscle and joint pain ..# 2 mood swings -Everything from anger to crying #3 Fatigue..initially for me chronic ....#4 Executive decline of cognition ..#5 Libido gone ...#7 -8-9-10 and man6 others . With .my specific adt drug Tak- 700 the main issues are joint and muscle pain and extreme fatigue ..most men couldn’t hang and dropped off . Not me ,I’m taking it til the end or until some major change occurs . I went from big prominent healthy veins to now almost no findable veins at all . I feel that cv issues will probably get me with years of adt use .. Take care dd... Scott
Yes, I’m truly aware of Cardio vascular and cardio rhythm or lack of rhythm ( AFIB)
or VTACH. ADT treatments do interference without our hearts.
What is “cv” issues?
cardiovascular
Yes, Survivor1965 ADHT Lupron Depot or any forms of it, I'm told and researched does create irregular heart rhythm disorders. Like Long QTc EKG detected out of heart rhythm issues. Other cardiovascular events, even Ventricular Tachycardia! Or low HR.
Not a good situation with me during 1st ADT session April 2008-2012. I had a sudden cardiac arrest smack dab in the middle. SCA May 12, 2011 spent 4 days on respirator breathing tube 12 days in CICU cardiac floor. Not fun.
Whoa nelly! What an ordeal . Lucky to have survived that one ..
6 month shots...
Hot flashes
Extreme fatigue
Major loss of strength and muscle mass
Loss of mental acuity, single focus, short term memory
Vivid dreams
Mood swings
Dry mouth
Joint pain
Foot leg swelling
Etc...
2Dee
I've joked that I'm a poster child for Lupron side effects (but it ain't funny). Here goes and in no particular order:
Hot flashes every 2 hrs. Wakes me up at night Should decrease as Lupron wears off...can take 6-9 mos.
Fatigue. Comes on suddenly and can be crushing.
Sex drive. Zero, zip, zilch, nada.
Genital shrinkage (isn't this a fun one?). Penis and testicles (and I hear this will be my new normal). Btw, try a penis pump to keep the blood flowing (but it's difficult to do when you have no interest in sex). 1" off of penis and grapes for testicles.
Insomnia and weird-ass dreams.
Joint pain. Came on suddenly, bilateral, shoulders, hands, knees and feet. Seems to be decreasing. Try tumeric, Alleve, herbal teas for some relief.
Muscle mass, poof. Wt gain of 10-15 lbs of...wait for it...FAT. Gut, butt and thighs. Oh, btw, exercise is important but don't expect some miraculous change in muscle. At best, maintaining status quo. I'm hoping that, as Lupron wears off, the exercise will help firm up whatever muscle is left and will help me to lose wt. But, as I've learned with Lupron, keep your expectations low; perhaps you'll be pleasantly surprised!
Oh, and if all these changes aren't enough, add a emotional roller coaster to your list. I was shocked at how depressed I became, filled with despair, and crying spells (for no apparent reason). I think much of this was related to incredible impact cancer has on one's life. Everything changed...and very quickly. I thought of myself as relatively cute, attractive, ave aging man, 34" waist, active, even sexual and sexually active 3+ times/wk. Poof gone! All of it. No amount of reading prepared me for this. No doctor even said, "oh, btw, everything that you are use to is going to change: how you feel, how you look, what you think and feel."
A true mind fuck. Add mood swings for extra measure.
Oh, there are other side effects as well - body hair loss but increase hair on head and beard.
Bone density issues.
Even had a wk of painful Charlie Horse in calf. Go figure.
Bout of gout (even though taking Allopurinol every day). None of the docs could explain that one.
My last - god, I hope so - was in May; 3 mo duration. So, in theory, supposed to start wearing off in August. It's now mid November. My PSA has remained <.1 and my T has surged to a staggering 7! I'm joking, of course. 7?? At this rate, I'll be...90 yrs old before it returns. LOL
So, there you are! More than anyone could possibly want to know.
I hope that you are spared this (and there are some men here who say that there were no changes. Lucky guys).
"Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and their Loved Ones" is a great source for understanding what to expect and how to deal with the side effects of Lupron and its sister drugs.
Good luck to you.
EdinBaltimore
I shared the same Journey. I just came of Lupron/Zytiga/Prednisone after 2.5 years.
My T has stayed at 7 and my PSA has been less than 0.06 4 17 months.
My doctors believe my extreme fatigue will abate in the next 90 days when my Testosterone recovers to 50.
My Testosterone was 550 prior to treatment. My Oncologist expects my Testosterone recovers to my baseline in a year.
Anyone have any opinions on T recovery after ADT thearpy?
Honestly, don't know. Literature seems to suggest 6-9-12 months before T returns to baseline. 4 months in and mine is now at 7. Virtually nonexistent. Trying to be hopeful. Btw, exercise is important. I'm not a gym rat at all, but i force myself to go. Seems to help with emotional component. Good luck!
Edinbaltimore
How did you get off Luperon and Zytiga. My oncologist has not offered me any hope of EVER getting off one or the other until I croak.
Sounds like a mountain of SE’s! That’s a bunch of stuff to take on daily. I’m just 71 days into 1st Lupron Depot 3 months. Why no or little or non-noticeable side effects for me.??
Remember, we ARE all very different. I attend a monthly local advanced PCa support group meeting. About 40 guys in the room. When you ask a question about a Lupron SE about 1/2 or so raise their hands. None seems to share exactly the same experiences.
BTW the fact that I can SEE others who have been through most of all the issues and are still here, some for more than 15 years is encouraging. Course those who didn't aren't.
2Dee
Your'e 15 years and still typing. I'm still here functional since Dx June 2005. 1st 42 IMRT's then 1st round(s) ADT 2008-2012. Throw in my Cardiac Arrest May 12,2011, and now on my 2nd ICD/pacemaker 01/17/2019. And still exercising 2X daily.
I'm just 1 and 1/2 years or so into my Dx PSA over 1300 and climbing a point a day. My do nothing "use by date" of 6 months is now long past. With all the ADT side effects it still seems like the better choice.
Stage 4, incurable, hasn't changed but the time remaining to enjoy family and friends has.
2Dee
I like the last sentence .. 👍😂
1300ng/mL PSA. That’s shocking. Wish you best of results and good luck with ADT treatment.
Be happy ,hope that holds out for you ..
I second all of the above
Oh ,the joys of it all.. I too took a great fall......
Top 10 in order:
Hot flashes
Depression and mood swings
Loss of libido
Sexual dysfunction
Insomnia
Fatigue
Loss of concentration
Loss of muscle mass
Genital shrinkage
Loss of apatite
Loss of libido is the only thing that really brings me down, because it affects two people
Only two? Hmmmmm (you're a sly fox... and you're from a region of France? Come clean)
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/20/2019 7:21 PM EST
Oh, I’m from Maine! I just picked that name ‘cause my first car was a ‘64 Plymouth Savoy!
O I C....... Fun in the backseat??? Lady's shoe prints on the inside roof? Lipstick on the seat covers?
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/20/2019 7:34 PM EST
I was wondering who bought that car from me! 🤣🤣
A Plymouth car man ... don’t make those anymore I think. My first car was a 64 Chevy Impala. Ugly green gas hog.
I cannot comment because I have avoided ADT. But I CAN comment to note how dismissive my oncologist has been when I cited these side effects as reasons I was not interested in ADT pre-RT or pre-RP. "Oh, they are not that bad and a few lifestyle changes will address them." I think that MOs have to engage in a great deal of denial in order to be able to promote their poisons. I do not disparage the "poisons" as not being life-saving; they can be. I DO disparage failing to address and acknowledge the potency of ADT as it affects men's physical, mental, family and emotional lives.
Update or really is this a "side effect" of Lupron Depot or not? Or medical issue?
(70 days in 1st 90 days Lupron hormone)
Has anyone who has had sex and ejaculate semen, prostatic fluid with brown(ish) slight reddish color?
Time for Urologist or Med Onc call or not?
It sounds as if you have blood in your semen. Have you had a biopsy recently?
Not biopsy
No not at all. Last Prostate biopsy was 2013’ish.
2 ideas maybe:
1. I must self-cath 6-7 times daily(urinary retention) neurogenic Bladder.
2. Excessive Exercising a) stationary bike b) abdominal crunches c) leg raises d) Eliptical machine
What do you think???
Time to call Urologist or Med ONC??
Depotdoug
I would call. Probably just because I'm a crybaby. I know a lot of people who self-cath have UTI's. Maybe you will just get a pat on the balls and a "There, there, you'll be ok." Or you'll have two giant purple bowling balls and be heading for the ER.
that's rust.....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/20/2019 7:22 PM EST
I'm almost 75. After six years on Lupron, I'd put fatigue at #1 on the list of side effects. I do as much as I can including lots of walking and making sure I space out my activities. I try to stay positive and be thankful the stuff is working. I'm also most thankful to be alive having survived kidney cancer 30 years ago.
Fantastic Sandy .. I’m glad 5hat you’re here too.
At age 81, I think fatigue is no 1, no. 2 is loss of size in penis and testicles even though they were not used that much at my age I still liked knowing they were there. No. 3 is insomnia, which I have had some luck by taking Melatonin. The rest of the side effects mentioned by others are minimal with me. I just had my 3rd injection and it was for 6 mos. The other two were 3 months. The only difference so far seems to be more frequent and intense hot flashes . May be one or two more per day.
Good luck to all in this battle, here's to all of you.🍸🍸🤠
"I still liked knowing they were there." I guess I should have took a picture.
Maybe my mistress did.🍸🍸🤠
Not sure how to address this urology/oncology/cancer issue?
(70 days in 1st 90 days Lupron hormone)
Update or really is this a "side effect" of Lupron Depot or not? Or medical issue?
Has anyone who has had sex and ejaculate semen, prostatic fluid with brown(ish) slight reddish color?
Time for Urologist or Med Onc call or not?
I had the brownish/ reddish color for about a year after I had biopsy and Brachy therapy. It cleared up on its own
I tend to agree. No I do agree. Mine brownish/reddish semen or prostatic fluid, whatever you call it could be from my ‘atrophied’ Prostate since IMRT Radiation zaps Sept-Dec 2005.
Or from self-catheterization 6-7+ times daily. Or from excessive irritating exercising bicycling a LOT 🚴🏼🚴🏻♂️🚴🏿♀️🚴🏻♂️🚴🏼🚴🏿♀️🧗♀️
My side effect: Writing silly ass humor here.....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 11/20/2019 7:25 PM EST
Who was it that said “kids say the darnedest things”? Or was it silly things?
Art Linkletter.... "darndest"
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 11/21/2019 12:03 PM EST
Where did all the good old talk star entertainers go.. I.e. Johnny Carson, Don Rickles or _________?
Look, I have been on almost continuous Lupron shots every 3 months since summer 2012.
Forget sexual response and hot flashes. Venlafaxine (75-mg/day) has taken care of the latter for me. Can I swim laps for 30-min/day? Yes. I am a happy camper.
On lupron for 9 months and always on new shot the edema on my lower left leg especially ankle and foot increases...and then subsides after a few weeks...maybe lupron dose is increase with pre existing dose.
Lupron side effects
Lupron Side Effects
Long term side effects of Lupron? 
Hey Lupron, where's my side effects?
