“For unknown reasons, most autoimmune diseases affect mostly women, including a 9-to-1 ratio for lupus, Hashimoto’s thyroiditis, autoimmune liver diseases and others; and a 3-to1 ratio for rheumatoid arthritis (RA) and scleroderma,” says Dr. Lockshin. “Investigators tend to attribute this fact to female hormones or chromosomes, but there are many other possible explanations, including environmental.”
Autoimmune diseases, such as RA or lupus, may have a profound effect on a patient’s pregnancy and child-rearing experiences, both physical and psychological, says Dr. Lockshin. Pregnancy also has an effect on rheumatic diseases, he says. Rheumatologists must consider a patient’s sex, gender, family planning goals and sexuality when making certain treatment decisions.
“Choices of medications are dictated by the fertility and pregnancy desires” of the patient, he says. “Because of symptoms like vaginal dryness and changes in appearance and mood, autoimmune diseases affect normal sexual behavior and pleasure. Choices of contraception are restricted by autoimmune diseases and their treatment. The primary concerns are fertility and pregnancy, since many available medications can affect either or both. An additional concern for rheumatologists is the manner in which hormonal contraception may or may not be used, both for fear of worsening illness and of drug interactions that change treatment plans.”
Due to his MCTD, Mr. Beckenstein has put off hormone replacement therapy for his transition due to concerns about lupus risk, which he says has been hard to endure.
“Although I very much believe that there are links between estrogen and lupus, and there are studies out there connecting the reduction of symptoms to androgenizing individuals, doctors are extremely wary about starting me on testosterone,” he says. “A major hurdle faced in being trans [a slang term for transgender] is learning to feel like one’s body belongs to you, but as a chronic illness patient, it feels much more like my body is a piece of medical property.”
Rheumatologists treating intersex or transgender patients may have more challenges with “negotiating interpersonal interactions, such as gender labeling in conversation or interactions with staff,” than with clinical ones, says Dr. Lockshin. Staff training on sexual and gender diversity, and sensitivity in talking with lesbian, gay, bisexual and transgender (LGBT) patients will reduce those challenges, says Mr. Orndorff.
Physicians need to know if a patient has female sex organs & could become pregnant while using a teratogenic drug, such as methotrexate, or if a patient is taking hormones for transition, which can affect bone & cardiovascular health.