17 yrs post Lupron injection -- just now putting all the pieces together

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? The United States of America

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Through a link to complete a Lupron survey from 2019 (clearly long over now)

What is your current age, height, weight? I am 58, 5’ 1/2" tall (5’2" tall when injected), I weigh 180 lbs (up from 135 when injected)

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Leuprolide

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 11.75 mg x 2

What condition was being treated with the drug? Severe endometriosis

For how long did you take the drug (weeks/months/years)? 3 months (was told it would where off after 6 months)

Date when you started the drug? Approx. June 1, 2006

Date when you quit the drug? Approx. Sept. 1, 2006

Age when you quit? 42

How did you quit (cold turkey or taper off)? all at once, as prescribed

How long into your usage did you notice the onset of side effects? 2 weeks, although I didn’t realize they were side effects at the time

What side effects did you experience that have yet to resolve since discontinuation? bone loss (resulting in spinal fusion), intense joint pain, brain fog/short-term memory problems, fatigue, Anxiety, Depression, loss of libido, vaginal atrophy

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[x] Loss of Libido / Sex Drive
[x] Complete Impotence

Mental
[ ] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] Suicidal Thoughts

Physical
[ ] Genital numbness / sensitivity decrease
[x] Weight Gain
[x] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain
[x] Dry / Dark Circles under eyes
[x] Bone degradation
[x] Vertebrae collapsing

Misc
[x] Persistent Fatigue / Exhaustion
[x] Vision - Acuity Decrease / Blurriness
[x] Hearing loss
[x] Frequent urination
[x] Other (please explain). Tremor in hands,

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Hormone therapy (Nuvaring), spinal fusion surgery, NSAIDs for joint pain and arthritis, medication for ADD (Adderall), depression (Bupropion) and anxiety (sertraline)

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)? I went perimenopausal within 3 weeks and never returned to normal as promised. 2 years ago, the hot flashes finally ended.

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I had already had surgery for endometriosis, but it returned. My doc told me that this drug Lupron would put me temporarily into menopause, allowing the endometrial tissue to die and be re-absorbed by my body, and then after about 6 months, my menses would return to normal. I was NEVER told that there was any chance that I might not return to normal.

About 2 weeks later, I went on a camping trip with my brothers and their families and found myself feeling extremely over-emotional – getting extremely angry over tiny things and crying at every turn. I felt psychotic, knowing rationally that my feelings were extremely inappropriate, but at a total loss to control them. I just wanted to hide from my family, but as I had not seen them in quite some time, they did not want me to withdraw even though I was behaving horribly. This incident damaged my relationship with my brothers and sisters-in-law for well over 10 years.

One day shortly afterwards, I woke up to extreme pain in my hands, fingers and elbows. It was so severe that I could not hold a coffee cup or pen without trembling and dropping it. I went to my primary care doctor who tested me for Lupus and Lyme disease and something else, but they all came back negative. When I requested my medical records after moving away a few months later, I found that she thought it was all in my head.

Not long after I’d moved I noticed that I could not focus or remember what I was doing from one minute to the next. I went to my new Primary Care doc, telling him that I thought there was something wrong with my brain because I was so incredibly forgetful and unable to focus. He did some kind of brain scan, said they found nothing and put me on Adderall.

I also found I was extremely fatigued (formerly quite athletic) although Adderall helped a little but my weight still soared. I became extremely depressed as I did not know what was wrong with me and seriously contemplated suicide many times. So, I’ve also been put on Antidepressants and anti-anxiety meds.

It goes without saying that I completely lost my sex drive, so between that, my weight and my “air-headedness,” my ex had enough and the man I so deeply loved walked out of my life.

Since then, I’ve struggled to hold a job, having lost 5 jobs in a row due to my forgetfulness. I live alone and was told by my doctor after undergoing a 4 vertebrae spinal fusion that I should never again lift more than 6 pounds.

Only recently, I wondered if the Lupron shot could possibly have anything to do with all of this, and sure enough, after finally doing just a little online research, I feel like a textbook case.

I know that to many of you, I am arriving quite late to the party, but I am SO angry that this drug is still being sold and that people are getting rich by ruining the lives of so many.

I am glad to have found some company in my misery, but deeply wish that none of this had to happen to any of us.

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Welcome @SheBob, great sentiment at the end, I feel very much the same, I wish neither of us were here, but glad that we all found and continue to find one another.

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Welcome to our forum, @SheBob!

I am deeply sorry that you have to go through this and have suffered for so long. The forum staff has long suspected that all anti-androgenic/endocrine disruptive substances have the potential to cause persistent side effects in predisposed patients. Unfortunately, Lupron is such a substance and we know from Lupron patient communities that persistent side effects are not uncommon and mirror those experienced by our Finasteride patients.

Unfortunately, there is currently no known treatment or cure for these side effects. On the plus side, the forum staff has made significant progress into initiating clinical research into what we call Post-Finasteride Syndrome (PFS). Don’t mind the name, we are convinced that all persistent side effects from anti-androgenic/endocrine disruptive substances have the the same or at least a very similar cause. Hence, any research into PFS will be to the benefit of all of us.

I hope you will gain some peace of mind knowing the reason for your situation, that none of this is your fault and that you are not alone.

Best,
N.

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Welcome @SheBob.

I am also one of those who didn’t make the connection until years later. It was Accutane that brought me here 11 years ago and that was 12 tormented years post-drug.

Yours does sound like a textbook case and it’s despicable that nothing about how this drug is regulated has changed after so long. …The clinical trials for most of its indicated uses sound like a joke. Probably better described as a secret joke AbbVie bought from the investigators. There was a woman named Lynne, who hosted the Lupron Victims Hub, and a few other women putting up a good fight several years ago, but as the case with many drugs, the FDA began to stonewall the issue. There was also an online petition to congress with over 10k comments where people who were injected with Lupron and their loved ones shared the horrors that befell them.

Noticed you mentioned loss of libido immediately after you mentioned starting SSRIs. Assuming it was in the time shortly after Lupron when this developed, but if not, you should be aware that quite a few of our members also developed what could tentatively be considered PFS based on the general symptom profile they reported in a comprehensive survey we ran a couple years ago. This included apparent genital tissue atrophy. I personally experienced worsening of many symptoms after starting sertraline and returned to my not quite as miserable post-Accutane benchmark after stopping it.

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Truly infuriating. I’d never heard of this drug before I read your story. Then I did some research and I am stunned. Docs giving it to kids so they grow a little taller? What the actual fuck? How is that even legal! And what are the parents thinking?

Did they do any hormonal tests on you pre / post lupron? Would be interesting to see if they returned to baseline with discontinuation or not.

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Developed as literal androgen/estrogen ablation therapy.

First sentence on Wikipedia page:

Leuprorelin , also known as leuprolide , is a manufactured version of a hormone used to treat prostate cancer, breast cancer, endometriosis, uterine fibroids, and early puberty, chemical castration of violent sex offenders, or as part of transgender hormone therapy.

One of my sisters told me she was offered this garbage (for either DX’d endometriosis or simply complaining of bad cramps, which can be a symptom of endometriosis) and turned it down flat after checking out the side effects. She had prior trouble (nothing life-altering AFAIK) with an anti-androgenic progestin BC prescribed for the cramps that she was told would help with acne and I got decimated by Accutane, so I can’t imagine what this could have done to her.

1 Like