Also, even with short-term treatment to delay precocious puberty, it has turned out that the downsides are considerable.
khn.org/news/women-fear-drug-they-used-to-halt-puberty-led-to-health-problems/
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For years, Sharissa Derricott, 30, had no idea why her body seemed to be failing. At 21, a surgeon replaced her deteriorated jaw joint. She’s been diagnosed with degenerative disc disease and fibromyalgia, a chronic pain condition. Her teeth are shedding enamel and cracking.
None of it made sense to her until she discovered a community of women online who describe similar symptoms and have one thing in common: All had taken a drug called Lupron.
Thousands of parents chose to inject their daughters with the drug, which was approved to shut down puberty in young girls but also is commonly used off-label to help short kids grow taller.
The drug’s pediatric version comes with few warnings about long-term side effects. It is also used in adults to fight prostate cancer or relieve uterine pain and the Food and Drug Administration has warnings on the drug’s adult labels about a variety of side effects.
More than 10,000 adverse event reports filed with the FDA reflect the experiences of women who’ve taken Lupron. The reports describe everything from brittle bones to faulty joints
In interviews andin online forums, women who took the drug as young girls or initiated a daughter’s treatment described harsh side effects that have been well-documented in adults.
Women who used Lupron a decade or more ago to delay puberty or grow taller described the short-term side effects listed on the pediatric label: pain at the injection site, mood swings and headaches. Yet they also described conditions that usually affect people much later in life. A 20-year-old from South Carolina was diagnosed with osteopenia, a thinning of the bones, while a 25 year-old from Pennsylvania has osteoporosis and a cracked spine. A 26 year-old in Massachusetts needed a total hip replacement. A 25-year-old in Wisconsin, like Derricott, has chronic pain and degenerative disc disease.
“It just feels like I’m being punished for basically being experimented on when I was a child,” said Derricott, of Lawton, Okla. “I’d hate for a child to be put on Lupron, get to my age and go through the things I have been through.”
In the interviews with women who took Lupron to delay puberty or grow taller, most described depression and anxiety. Several recounted their struggles, or a daughter’s, with suicidal urges. One mother of a Lupron patient described seizures.
Such complaints have recently come under scrutiny at the FDA, which regulates drug safety.
“We are currently conducting a specific review of nervous system and psychiatric events in association with the use of GnRH agonists, [a class of drugs] including Lupron, in pediatric patients,” the FDA said in a statement in response to questions from Kaiser Health News and Reveal from The Center for Investigative Reporting.
The FDA is also reviewing deadly seizures stemming from the pediatric use of Lupron and other drugs in its class. While there are other drugs similar to Lupron, it is a market leader and thousands of women have joined Facebookgroupsor internetforumsin recent years claiming that Lupron ruined their lives or left them crippled.
But the FDA has yet to issue additional warnings about pediatric use, and unapproved uses of the drugs persist.
Meanwhile, pediatricians and industry researchers are criticizing doctors for using Lupron to help kids with normally timed puberty grow taller, an “off-label” practice that was shown more than a decade ago to cause harm. Off-label prescribing is legal and common, but means doctors are using drugs in ways the FDA did not determine to be safe and effective.
In 2009, an international consortium of pediatricians hadwarnedagainst such use. Among them was a pediatric endocrinologist, Dr. Erica Eugster, whose research found that puberty-delaying drugs are widely used off label, even though the safety of such prescribing is unproven.
The health problems described by more than a dozen women in interviews could illustrate long range effects of pediatric use and warrant further investigation.
“That’s what you have to ask, ‘Is this the tide rising?’” said Dr. Alan Rogol, a University of Virginia Medical School professor emeritus in pediatrics who said he prescribed the medication for decades. “None of us can answer that.”
Continues: khn.org/news/women-fear-drug-they-used-to-halt-puberty-led-to-health-problems/