Women can get ankylosing spondylitis (AS) and related diseases. A goal of the Spondylitis Association of America (SAA) is to educate the public and medical community that contrary to traditional belief, spondylitis is not just "a man’s disease."
In general, it takes longer for women to be diagnosed with spondylitis than it does for men. The following reasons for the difficulty in diagnosing spondylitis in women are generalizations and not to be used to judge spondylitis in ALL men vs. ALL women.
- Some women have a mild form of the disease that may not be as easily detected as it is in men.
- The disease may progress more slowly in women.
- Spondylitis can affect different parts of the body (neck, peripheral joints) in women than in men (low back, spine), yet the diagnostic criterion is based on men’s symptoms.
- Some women with spondylitis develop symptoms that resemble fibromyalgia or early rheumatoid arthritis.
The average age of onset does not differ significantly between the sexes, but spinal fusion (ankylosis) may progress more slowly in women than men. Women tend to be worse off than men are when it comes to pain and the need for drug therapy. The slower and relatively incomplete progression of spinal fusion in women can mean that it takes longer for pain to decrease as a result of spinal fusion.
Pregnancy - Course of pregnancy and delivery
AS has no harmful effect on the course of pregnancy or on fetal well-being. The rate of miscarriage, stillbirth, and small for gestational age infants is within the limits for healthy women. Women with AS are not more prone than healthy women to get preeclampsia or come into premature labor. As a rule, pregnancies conclude at term with the delivery of live, healthy children of normal birth weight. Compared to healthy women, Cesarean section is more frequently performed in patients with AS. Inflammation or ankylosis of the sacroiliac joints is not a mechanical hindrance to giving birth. Also, hip disease or total hip replacement does not preclude normal delivery. Thus the severity of AS seems not a likely explanation for the increased rate of surgical delivery. Sometimes the obstetrician prefers to do a selective cesarean section in a woman with inflammatory joint disease. It also occurs that the anesthesiologist will not give an epidural anesthesia to a woman with AS for fear of problems due to ankylosis of the spine. These concerns can be overcome by doing an x-ray of the lumbar spine before a planned pregnancy so the doctors taking care of the delivery know what to expect.
Pregnancy - Drug treatment during pregnancy and lactation
Patients with spondylitis frequently have active arthritis at some stage of pregnancy. For the patient who has active arthritis in one or a limited number of joints, intra-articular steroid injection(s) can be very useful. In patients with AS, analgesics like acetaminophen or low dose corticosteroids are frequently insufficient in controlling the often marked nocturnal pain and the morning stiffness of the spine. NSAIDs are more effective in this respect. NSAIDs can be used in the first half of gestation since there is no indication that salicylates, phenylbutazone, indomethacin, fenoprofen, ibuprofen, ketoprofen, naproxen, diclofenac, mefenamic acid and piroxicam do harm to the developing fetus. At present, we do not know whether this is also true for the new, so-called COX2-inhibitors. They should therefore be stopped at the start of pregnancy. However, NSAIDs can have adverse effects on the fetus when given during the last eight weeks of pregnancy. They can constrict a small blood vessel that bypasses the lung in fetal life and also impair renal function of the fetus. Side effects can be avoided when the NSAID is withdrawn eight weeks before delivery or development of side effects in the fetus is monitored by repeated ultrasonography. Both side effects resolve within 24 hours after withdrawal of the drug. Most traditional NSAIDs can be taken during lactation, as only very small amounts are secreted into breast milk. Newer selective COX-2 inhibitors, such as Celebrex and Bextra, must be avoided because of lack of investigation in the nursing child.
Some AS patients are treated with immunosuppressive drugs like methotrexate (MTX), sulfasalazine and tumor necrosis factor alpha (TNF) inhibitors. Low-dose weekly MTX is frequently used in combination with TNF inhibitors. MTX can induce congenital anomalies and must not be taken during pregnancy. Women and men of fertile years should use it only when practicing safe contraception. Due to the possibility that active metabolites of MTX remain in cells or tissues for about two months after cessation of therapy, conception should be postponed until three months after withdrawal of the drug. Folate supplementation should be continued before and throughout pregnancy.
Sulfasalazine daily can be safely taken during pregnancy and lactation. It does no harm to the fetus or to the nursing child. Sulfasalazine counteracts folic acid, a vitamin necessary for normal fetal development. Folate supplementation before and throughout pregnancy should therefore be given to fertile women on sulfasalazine.
The TNF alpha inhibitors Etanercept [Enbrel] (soluble TNFa-receptor) and monoclonal antibodies (infliximab) [Remicade] and adulimab [Humira] have not been found harmful to the offspring in animal studies. Experience from human pregnancy is limited but thus far reassuring. At the present stage of knowledge, TNF alpha inhibitors should not be continued during pregnancy. In contrast to infliximab and adulimab, etanecerpt has a short elimination half-life of one to two weeks. It may be reasonable to assume that withdrawal at the first missed period is without harmful effects.
NOTE: The above sections on Pregnancy come from an article by Dr. Monika Oestensen, M.D. Department of Rheumatology, University Hospital of Berne, Switzerland. The article appeared in the January/February 2005 issue of our magazine, Spondylitis Plus, which is available to SAA Members in the Spondylitis Plus online archive by clicking here
In the May/June 2005 issue of Spondylitis Plus, also available in the archive, Dr. Muhammad Asim Khan and Dr. Elain Adams also addressed the issue of using TNF Inhibitors (Enbrel, Remicade, Humira) during pregnancy:
There is a categorization that is applied to drugs, a), b) and c). Most drugs are what we call category c) in pregnancy. This means we have no controlled trials in which we are actually studying the effects of this drug in pregnancy. The reality is that this is not the kind of study that we would do. However, we can look at animal data. This can be somewhat helpful. Most of the time we are stuck with "natural observation," where for instance, there is a patient who was not intending the consequences of pregnancy, who was on the drug and we follow it along. There is growing data that these drugs are reasonably safe during pregnancy. The emphasis really is on "reasonably," because we don't know for sure, but there is growing evidence that there are patients before and during pregnancy that are okay. All other things aside, I have to say that it would be safest if you can do without it. However, as the data grows, there may be circumstances in which life is intolerable without it and the risks are small enough that you can go ahead and continue it.
Depression in Women
People with chronic diseases are more prone to develop major depression. In fact, a British study showed that 37% of people with spondylitis suffer at least one bout of depression during a lifetime. Fortunately, more than 80 percent of people with depression can be treated successfully with medication, psychotherapy or a combination of both.
Women experience depression at roughly twice the rate of men, although it is an illness that affects both sexes. Contrary to popular belief, depression is not a "normal part of being a woman" nor is it a "female weakness". Researchers continue to explore how issues unique to women may contribute to the increased rate of depression. Such issues include reproductive, hormonal, genetic or other biological factors; abuse and oppression; interpersonal factors; and certain psychological and personality characteristics.
About one in every eight women can expect to develop clinical depression during their lifetime. Depression occurs most frequently in women aged 25 to 44 (Note: when a women is most likely to begin feeling the symptoms of spondylitis), and depression in women is misdiagnosed approximately 30 to 50 percent of the time.
Women in Research Trials
The focus of clinical trials has changed in recent years. From the late 1970's until the early 1990's, medical research studies were done almost entirely on men. Women were excluded from participation in clinical trials and other studies on the basis of their potential to become pregnant, or because it was believed that cyclical hormonal changes would confuse the research results.
It was shown that medical interventions may act differently depending on the person’s sex, men-only clinical trials cannot detect potentially important differences, and some medical conditions occur more commonly in women than men so researchers need to include women in trials to address these conditions. Thus, in the 1990’s, several rules passed to ensure that women could contribute to medical research. Nowadays, all people who meet a study's inclusion and exclusion criteria are allowed to participate, regardless of gender, unless otherwise justified.
However, women during their childbearing years need to consider special circumstances before participating in a clinical trial.
- Many medications tested in clinical trials are not known to be safe for pregnant women. They may be safe, but that has not been proven in most cases. For this reason, clinical trials often require women to use certain types of birth control during the trial.
- Women may need to take pregnancy tests during the trial if the trial involves drugs that are unsafe for pregnant women.
- Similar rules apply to breastfeeding -- nursing mothers may be ineligible for some research studies.
OTIS, the Organization of Teratology Information Specialists -- A non-profit organization made up of individual services (TIS) throughout North America. We are dedicated to providing accurate evidence-based, clinical information to patients and health care professionals about exposures during pregnancy and lactation.
http://www.womenshealth.gov - The National Women's Health Information Center (NWHIC) is a service of the Department of Health and Human Services' Office on Women's Health. The NWHIC Web site at 4woman.gov provides a gateway to women's health information resources developed by the Department of Health and Human Services, other Federal agencies, and private sector resources and covers over 800 topics.
http://www.nmha.org/infoctr/factsheets/23.cfm - The National Mental Health Association (NMHA) is the country's oldest and largest nonprofit organization addressing all aspects of mental health and mental illness. The site provides information on women and depression, including signs/symptoms, diagnosis, and referrals for local treatment services.
http://www.womancando.org - The Society for Women's Health Research has launched this public education campaign to provide women with accurate information about volunteering for medical research. Nearly 90 other organizations have joined our Alliance for Women in Clinical Research, to bring this information to women throughout the U.S.