There is a lot of bad information floating around about Lupus. Sadly, a lot of it comes from doctors.
I belong to a Lupus support group on Facebook. One woman recently posted that, although her initial tests had come back positive, her doctor told her that she couldn’t have developed Lupus because she was too old. She is in her early 30’s. Several dozen members and I told her that this doctor is clearly uneducated. In fact, several members had been diagnosed in their 30s, 40s, and 50s.
The Transition of Lupus
When I commented, I added that Lupus actually used to be considered an ‘old person’s disease.’ One young woman disagreed with me, saying that her Ob-Gyn told her that SLE most commonly occurs in women and during their reproductive years. I explained that it has transitioned into that since the introduction of hormonal birth control. Her doctor is defining Lupus by a narrow window of experience, his time in practice.
It brought to mind this excerpt from my book, In the Name of The Pill:
Lupus from a Historical Perspective
Imagine you’re a rheumatologist. You developed your foundational understanding of lupus in medical school, but you really define lupus by what you’ve seen first-hand in your practice. Everything you know about the onset of disease, the typical patient, when it flares, and when it doesn’t is based on (and somewhat limited by) your time in practice.
Now, forget everything you know about lupus, and look at it through the eyes of a physician practicing in the late 1960s.
Everything Dr. Giles Bole Jr. knew about lupus from his time in practice was being challenged. Events he had first classified as anomalies grew more frequent. Through conversations with concerned colleagues, he realized he wasn’t the only one feeling uneasy about birth control pills. Even some medical journals started doubting the ‘miracle pills’ that had been on the market for less than a decade. An editorial in the October 1969 edition of The Lancet said, “The wisdom of administering such compounds to healthy women for many years must be seriously questioned.” [NPH p. 6109]
Dr. Bole took up research that landed him before Congress at the Nelson Pill Hearings. He described the phenomenon of young women contracting SLE, a rare disorder that was even rarer in young patients. He presented several examples of patients who developed symptoms within the first few months of starting The Pill. In many cases, the symptoms reversed when the women stopped taking the synthetic hormones. Scientists at that time were already aware of certain medications causing drug-induced lupus erythematosus (DILE), but this was different because it was happening in young women, and in many cases, the symptoms were irreversible.
These weren’t just isolated cases in Dr. Bole’s lab. Later in the hearings, Dr. Herbert Ratner estimated that one of every 2,000 birth control users developed lupus. [NPH p. 6737] (Today, the typical rate is estimated to be 1 in 10,000). Dr. Bole speculated that the synthetic compounds in birth control were to blame, saying that the ability to crossover between synthetic and natural hormones had limitations. He added, “I believe that it is clear to all of us that additional long-term studies relating to the biological effects of these compounds are extremely important.”
A report published in Arthritis and Rheumatism in 1999 concluded that the incidence of lupus had tripled in the past forty years. The CDC offers a conservative estimate of 322,000 patients currently suffering from SLE in the US, while the Lupus Foundation of America estimates the number to be 1.5 million. Either way, something sparked this once rare disease. And, 90 percent of those suffering are women.
In 2009, scientists from McGill University in Montreal released the results of a massive population study. They collected data on 1.7 million women and found that women on oral contraceptives were 50 percent more likely to develop lupus. The greatest risk was in the first three months when there was a 2.5-fold increased risk.
Studies like this give us overwhelming preliminary evidence that hormonal contraceptives play a role in causing lupus. Unfortunately, we aren’t much closer to confirming the suspicions today than we were when Dr. Bole testified.