Brandi Laperle was a teenager living in Edmonton when her symptoms first arose. Severe cramping that would have her doubled over in pain, heavy menstrual flow, digestive issues, bladder pain, and swollen gums. It wasn’t until she was 31-years-old that she was finally diagnosed with endometriosis.
After years of trying different treatments like IUDs, birth control and pain medication, Laperle was given Leuproreli, more commonly referred to by its tradename, Lupron, and after one injection went into menopause overnight. A phenomenon known as chemical castration.
“I didn’t know that being given a certain treatment protocol, without add-back therapy was going to put me into menopause overnight, instead of the gradual process that happens over the course of a decade. And I didn’t know what the long term consequences could be,” says Laperle, adding, “My doctor said this is a lifelong thing. There is no cure, he’s done what he could, and that was the best I could really hope for.”
Although endometriosis was discovered over a century ago, there continues to be a lack of knowledge on the subject. From failed surgeries or misdiagnoses to being prescribed Lupron, which often makes the condition worse, women are desperate for better research and treatment.
Lupron especially continues to be controversial. Originally developed to treat prostate cancer, the drug was pushed on the market to also treat endometriosis in women. The drug is a hormone agonist, which prevents the receptors in the brain from releasing sex hormones in women this kick-starts menopause by reducing the build-up of the uterine lining.
In Laperle’s case, her hormone receptors never came back on after she was administered the Lupron, sending her into early onset menopause in her 30s, a permanent repercussion she now has to live with.
Manufactured by the drug company Abbvie, and one of their branches TAP, Lupron has proven to be a big source of revenue. According to Abbvie’s Annual Reports, the company made $726 million in the US alone, with $166 million from international sales making a total of $892 million for the company on Lupron alone in 2018. This makes up roughly 2.7 per cent of Abbvie’s total net revenue of $32.8 billion. In 2007, TAP brought in $3.1 billion from Lupron and their other drug Prevacid.
The symptoms of Lupron therapy can be similar to menopause: hot flashing, night sweats, trouble sleeping, mood changes and weight gain. However, other symptoms can present themselves such as nausea, bone and joint pain, headache and fatigue. Lupron has also been known to cause more severe side effects, which are not as common, such as osteoporosis, menopause, depression or suicidal thoughts and dementia.
In an article for Lawyers and Settlements, a woman’s Lupron prescription caused a brain injury and early onset dementia. Her discharge diagnosis from the hospital read that the woman, Amy, “had Lupron Depot induced dementia, bipolar disorder and anxiety.”
In another report by the Las Vegas TV station, KTNV, women were coming forward after experiencing adverse and severe side effects from being prescribed Lupron for their endometriosis. Women were having intense pain in their bones and joints, vision loss, and depression which had not been explained as possible side effects. The FDA added more warning labels to the drug after the investigative report was published.
A local woman, Celia (whose name has been changed for confidentiality) had severe endometriosis for most of her life. She had received different diagnoses for diseases, ranging from celiac to colitis, before finally being diagnosed with endometriosis. She was put on Lupron twice for heavy bleeding and cramping: the first time for six months before her diagnosis, the second for five months.
The Lupron not only didn’t help with the endometriosis symptoms, but it added more symptoms. Celia experienced more severe and longer periods, joint pain and bone loss including in her teeth, and leg numbness. She says she was never told about the possible side effects.
“Nobody warns you that it has the potential to hurt your bones. It’s right in the product monograph, which I ended up pulling off their website and reading after I started getting joint pain. Nobody tells you your period gets worse,” she adds.
“I can’t breathe because of the level of pain about a week after an injection. It’s just like I’m fine, I’m fine. Then all of a sudden you’re on the floor and you’re trying not to make noise and your coworkers are calling 9-1-1, getting pissed off and it takes 45 minutes for them to get there. Then as soon as you say the word endometriosis, the lights go off in the ambulance. When you get to the hospital, you’re put in the waiting room and you’re the last one called in.”
Lupron has faced several lawsuits already. In the 2010 case Cardenas and Paulsen v. Abbott, Takeda, TAP, paragraphs 13, 15-18 and 21-22 allege complete negligence and malpractice as well as damage done to the patients. The court documents state that studies have shown that more than one-third of the women who took Lupron did not have any reversal after taking the medicine and suffered permanent bone loss and other symptoms. This lawsuit was eventually dropped by the plaintiffs.
In another case, Karen Klein v. TAP Pharma made it to the U.S. Supreme Court before being dismissed. David Redwine, an endometriosis specialist, shared his notes regarding Klein’s case in the Lupron Victims’ Hub, a site which explores the investigations, malpractice, misuse and so much more of Lupron. Redwine states how there are adverse side effects to Lupron, and the studies that have been done on the drug are funded by TAP Pharmaceuticals and are poorly conducted. Redwine believes that Lupron is completely the cause of Klein’s bone loss and the long-term side effects she continues to experience.
No lawsuits involving Lupron patients have been successful in court, suggesting many have been settled out of court to spare great financial losses on Abbvie and TAP Pharma.
However a lawsuit involving TAP and fraud was successful. The New York Times reported on a case in which Abbott Laboratories and Takeda Chemical Industries, or joint TAP, agreed to pay $875 million to settle criminal and civil charges for illegally manipulating medical industries. It was contended that TAP sales representatives gave free samples of Lupron to doctors, and then helped them to get government reimbursements for hundreds of dollars per dose.
TAP has also lost $1 billion in legal liability for dangerous side effects, inadequate testing, and corrupt marketing practices for Lupron, according to the Personal Injury.
Lupron Victims’ Hub Victims’ Hub raises the issue of a study on Lupron performed by TAP. Section of the report including “Study Results” and “Discussion” are censored, while “Key Findings” and “Conclusion” have been completely redacted. These areas of the study talked about the findings of the effects Lupron has on suicide and depression.
The FDA has also reported on the adverse effects of Lupron. Since 1997 there have been 16.7K cases of ill health, 7.2K serious cases, and 1.5K deaths related to Lupron.
Madison Breckenridge, a registered nurse and endometriosis patient from Pincher Creek, had a doctor that listened to her symptoms. She was diagnosed and given Lupron in her early thirties.
“I actually really liked Lupron,” says Breckenridge, ”because I was in so much pain before I was put on the drug and it did help with the pain. However, that’s not the typical experience.”
She experienced the menopause symptoms such as hot flashing and night sweats, but says it was much easier to cope with than the endometriosis. She also was well informed of the risks associated with taking Lupron and was only on it for four months. Fortunately, she didn’t end up with the long-term side effects.
“We don’t have enough people researching these conditions and what works for them,” says Breckenridge. “Lupron has been the drug of choice for 20 years and it’s not perfect. We know what’s not perfect, but is it better than what you were having before?”
She also says she would recommend Lupron to future patients of endometriosis, but under proper supervision and following precautions to minimize the drug’s negative long-term effects.
Julie McConnell, although not prescribed Lupron, raises another issue in her endometriosis treatment. During her first surgery, her surgeon went in to see if endometriosis was present and if there was any cancer present. All that was said to McConnell before the procedure was that the endometriosis would be removed if there was any, and she would be notified of cancer.
Following the surgery, all she was told was there was no cancer and that endometriosis had been found. A year later she returned in even more excruciating pain than before the surgery and was told endometriosis and an infection had been found but was not removed completely because there was too much. The surgeon had performed an ablation surgery, scraping and burning the tissue, as opposed to an excision surgery which removes the tissue at the root.
“There was a lot of disease left behind,” says McConnell. “A lot. And because he didn’t remove any organs at the time, my left ovary which was covered in disease and also my left fallopian tube, which had ruptured and was full of infection, that’s where most of the disease and infection was left behind. All on my left side. So my left side was hurting me a lot more than the right for that reason.”
After two years of searching for a new surgeon specializing in endometriosis, she found one at the South Health Campus in Calgary and travelled from Edmonton to have the surgery. This time, McConnell’s endometriosis was properly removed with excision surgery, and her uterus, right and left fallopian tubes and left ovary were removed because adenomyosis had been found. Adenomyosis is a disease similar to endometriosis but one that occurs inside the uterine wall and can only be cured with hysterectomy.
Although McConnell was not administered Lupron, she stresses the importance of taking charge of your health by understanding the procedures and medications given to you by your medical provider.
“I mean now we’re starting to see more long-term side effects with [Lupron]. I really am hoping that most women who are experiencing the side effects are reporting them to their doctors because the doctors are supposed to report that back to the drug company. When these women are experiencing these symptoms, I know lots of them get angry and never go back to their doctor. Unfortunately that’s not actually helping the situation. We do need to go back to our doctors and tell them, ‘Hey, I’m experiencing this. It’s not going well for me. What can we do about it?’” says Breckenridge.