Lupron for Precocious Puberty: Parents and Patients Speak Out

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lupron precocious puberty
Recent attention in a dual Reveal and Kaiser Health News Report (‘Kaiser Report’) to the risks of Lupron’s use in children with central precocious puberty (PP) or growth issues, and to Lupron’s risks in general, presents an opportunity to continue the disclosures on the risks of Lupron. In a 28 year battle to expose the dangers of Lupron (see herehere, and here), I’ve encountered few occasions which have held hope that a spotlight would be trained on Lupron’s risks. When my website, Lupron Victims Hub, was contacted last spring by this Reveal/Kaiser investigative reporter, who developed an interest in the pediatric Lupron victim, I had hope that these young children, the now-adult ‘children’, and the parents of these children could finally get some recognition and validation of their adverse experiences through lay news coverage. Until this reporter’s interest and her Kaiser Report, no media had ever been interested in addressing the pediatric population. (The investigation’s initial focus was into Lupron’s effects in IVF and the offspring [see reply to “January 19, 2016 comment by Connie” here], but thankfully there was a shift to precocious puberty.)

Lupron in the Media

Media coverage of Lupron’s adverse effects in fertility treatment/IVF (for which Lupron has never gained FDA approval) occurred in a 2-part series in 1996 (August  4 & 5; Boston Globe, p 1: “What Price Pregnancy – The Painful Quest for Fertility” by Dolores Kong); and media coverage of Lupron’s adverse effects in endometriosis took place in 1999 (9 years after Lupron’s FDA approval for endometriosis) in a 3-part Boston Herald series (see here, here and here).  But it took 24 years from the time of Lupron’s FDA approval for precocious puberty (in 1993) for Lupron’s adverse effects on the children to make news.  This has been a disgrace, and more than frustrating.  So thank you Christina Jewett, Reveal and Kaiser Health News Report.

A considerable amount of my research on Lupron, its history, and adverse effects (as found in links on my website, including  “Risks” page, under “Precocious Puberty”) was provided to the reporter and included in the Kaiser report (though surprisingly mention of my website was not);  however, there is so much ground to cover that neither the Kaiser Report, nor the next article published on Lupron’s pediatric risks, nor the next article published (nor this HormonesMatter series or my website), nor any pending article could ever possibly address all aspects of the many troubling issues surrounding  treatment of the youth (or adults!) with Lupron (or any ‘GnRH analog’, the class of drugs to which Lupron belongs).

For some time I have been trying to further research the effects of using Lupron in the pediatric and teen population, and have a collection of information not yet posted on my website. The heart-wrenching emails I’ve received from distraught mothers or now-adult treated children compelled me to start writing a “Call to Action” to the pediatric endocrinology community – an ‘Open Letter’ seeking to acknowledge and address these children’s and now-adults’ problems. This draft paper has hundreds of hyperlinks, and was being fortified with data from recently received FDA Lupron Depot-PED adverse event reports. But due to my own personal exposure to Lupron (for endometriosis and IVF), I keep getting sick with sudden and repeated gastroparesis episodes, and this ‘Call to Action’ remains unfinished. (Lupron has destroyed the neurological impulses in my gut, resulting in 61 hospitalizations between 2003 and 2014. Lupron has also caused abnormal electrical rhythms in my heart.) These gastric episodes are debilitating and continue unabated and frequent, kicking life and all plans to the curb, and forcing everything into a ‘stall mode’ (more like chaos).

In the meantime, I feel that the ‘Kaiser Report’ was a ‘Call to Action’, and I believe it should be viewed and treated as such. As a result, I now have a considerable amount of information that doesn’t need a ‘finish’, and which can be cobbled together here – with the hopes of amplifying the need to substantively address the problems these children and now-grown kids have. And so, over the course of the next 6 weeks, numerous issues addressing the use of Lupron in the pediatric and teen population will be explored.

What Lupron for Precocious Puberty Really Looks Like

My website’s mailbox has received cries of help since 2008 (many frantic in nature) from a number of mothers of children treated with Lupron for precocious puberty or growth issues, as well as hearing from the now-adult treated children, who continue to experience serious physical and emotional adverse events.  Since only a few of these women were able to be included in the ‘Kaiser Report’, this series will begin with a few additional testimonies from some very worried mothers and injured former child patients. Their voices speak volumes:

A mother writes:

“I injected my daughter daily with this poison for 9 years…I was told that there were no known long term side effects. My daughter is now 20 years old and has suffered from pain and soreness in her neck, back, hips, arms, wrists, hands, fingers, legs, ankles, and feet. She suffers from fear, anxiety, depression, and has self-harmed. There are days that she cannot get out of bed and times when her fear, depression and anxiety are so out of control that she sleeps all day and stays up all night. It doesn’t seem as if any doctors understand or care what she has gone through … She has been denied SSI/Disability, has no job. She cannot sit or stand for very long. The worst part of this is that I injected this in her and I have no way to help her…I do not know where else to turn.”

A teenager formerly treated with Lupron as a child writes:

“I am currently 15 years old. When I was 5/6 I was diagnosed with precocious puberty and quickly started on Lupron injections monthly. Originally, I was a happy child, before all this began. I rec’d it monthly for approx. 5 years.  During this time I had a very weak immune system and began to become miserable. I was 8 years old saying I wanted to commit suicide. That’s not normal.  But no one thought it had anything to do with the medications…I now have mild Borderline Personality Disorder and major depressive disorder. I also now have EXTREMELY high heart rate (110 beats per minute)…Is there any cleansing or anything similar to that that would work to help? I feel as though my life has been destroyed by a choice my parents made for me.”

A mother beside herself with worry writes:

“Please help my daughter!!  She was given Lupron at age 6 until she was 9 for CPP…We finally stopped the injections because we couldn’t watch her go through the pain anymore.  She is now 16 and suffering.  We were only told of 4 possible side effects :  1. Redness at injection site, 2. headache, 3. nausea and/or vomiting, 4. possible pain in the joint where the injection was given…We are now dealing with: IBS, weight gain/loss, headaches, bone and joint pain, memory loss, insomnia, depression.  The list goes on and on and the symptoms keep getting worse!! No lawyer will help, no Dr’s will step up to the plate!  I will do what I have to do to help my daughter!!  Somebody please help us!!”

A young woman formerly treated with Lupron as a child writes:

“I was diagnosed with precocious puberty at the age of 6…I was given monthly injections over the course of about 5 years…I was diagnosed with depression at about 8 years of age, and it has gotten worse over the years.  I have been hospitalized 5 times due to my mental health. I also have joint pain very bad in just about all my joints and I am only 23. I also get crippling migraines very often…I feel Lupron was the cause of a lot of my pain both physically and emotionally.”

A young man formerly treated with Lupron as a teenager writes:

“from the age of 13 to 17 I was on Lupron to hold back puberty so that my body would be able to grow.  After coming off the Lupron not even a year went by when I was diagnosed with severe osteoporosis. For 6 years I have been trying to battle this disease and to no avail. Because of my osteoporosis along with other things I am now paralyzed. If you could contact me I would truly appreciate it. I’m also trying to see if some of my other health conditions are caused by this.”

And another mother writes:

“I reviewed your web site and was horrified and shocked to read what has been going on for decades concerning Lupron.  I am concerned that many of my daughter’s health issues may be tied to extensive Lupron injections she rec’d…She has been plagued with health issues since starting the Lupron.  We were never given any warnings about possible side effects. We were told the only side effect was a soreness at the injection sites. She is now 16 and suffers from a multitude of illnesses…We have only been able to piece everything together because of your web site. I believe either doctors knew and withheld information or never pieced it all together. Please share any information or advice you have for us, there is precious little information about what long term use of Lupron does.”

Another mother writes:

“My daughter was prescribed Lupron for CPP at age 8.  She started having joint pain and other strange symptoms pretty soon after. I didn’t make the connection to Lupron. You see, I’m a pharmacist and I read all the provided information on the drug and none of these are listed. I also tried to research on my own and found nothing but what the manufacturer puts out. The endocrinologist assured me that he’s been prescribing it for years and has seen no side effects. Whenever we reported side effects to him, he was certain that they didn’t relate to Lupron. I eventually decided after her 6th shot (she gets them q 3 mo) to stop the Lupron and that’s when I found your website. How very distressing to read all these sad accounts…Is there anything that can be done to help negate, reverse or minimize these negative effects?”

Another mother writes:

“My daughter was diagnosed with PP at 6…She took 7-8 injections…we saw our happy-go-lucky child turn irritable and depressed…once she hit her teen years, everything exploded. She experienced depression so severe she’s been diagnosed with PTSD, Severe Anxiety Disorder and Severe Depression Disorder. She’s spent time in a mental hospital, and the last three years have been sheer hell. Her anxiety is so extreme, she couldn’t attend the last 3 years of high school … and it’s looking like she may turn into a complete agoraphobic. HELP! Is there anything anyone can do to help her? …This child has already tried to commit suicide more than once. I’m afraid we’ll lose her if we can’t address this problem and find a way to solve it or at least ameliorate the damage!”

And another mother writes:

“Lupron was prescribed to my 6 year old daughter…my husband and I were very leery, yet, we were comforted by the physician, stating this was going to help.  Since then, our daughter who just turned 8 years old is in pain ALL the time. I am overwhelmed because I knew NOTHING of all of this. I knew nothing about the adverse effects of this drug, I knew nothing period. She has been having issues that of course I have brought to her prescribing physicians attention, however, I was told everything was fine.  So I started researching myself…and now I am terrified. WHAT CAN I DO?  WHAT HAVE I DONE?”

Other emails echo similar physical and emotional adverse events. The emails I have received pertaining to precocious puberty or growth issues have not been overwhelming in number (precocious puberty is a “rare disease”), but the contents of these emails are indeed overwhelming. And the common threads are “we were told there were no long-term effects“, “my daughter’s doctors say there’s no connection to Lupron“, and “Help!“.

These stories are heartbreaking. It is very troubling that they reach out to the internet because there does not seem to be anyone else. Who can help these children, these now-grown women, these families? Someone please tell me where they can go? I would very much like to be able to provide a positive answer and instructions of where they can go and whom they can talk to, and preferably provide the name of a clinic and doctor/team dedicated for Lupron injury assistance, but the latter does not exist.

It has been indescribably difficult to respond to these hurting and frightened victims’ questions knowing there are no real answers, no definitive direction, no designated doctor or clinic, no holistic ‘cleanser’, no known antidote to provide. This is the risk information these unfortunate souls should have received from their physicians before injection, not in a post-injury search of the web.

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If you have a Lupron story, please consider sharing it on Hormones Matter.

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