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Reproductive and Sexual Health for People With Myositis

Adapted from a presentation to the HSS Myositis Support Group

There is little research on reproductive and sexual health that is specific to people who have myositis. This is because it is a rare disease. Much of what is presented in the summary applies to connective tissue diseases (CTDs) in general but relates to myositis as well. This summary provides some answers to help achieve overall sexual health and to offer guidance to achieve a healthy pregnancy and live birth.

It is important to remember that no two patient situations are the same. It is also important to maintain lines of communication with both your rheumatologist and obstetrician-gynecologist (Ob/Gyn) for individual guidance.

Sexual issues for people with autoimmune/connective tissue disease

Research has shown that 31% to 76% of people with various CTDs experience sexual problems, meaning sexual difficulties and/or a lower sex drive. These sexual problems can be caused by the disease itself or by the side effects of medication and/or psychosocial factors. For example, sexual difficulties may arise from:

  • physical and joint limitations related to arthritis, since limited range of motion may make it difficult to maintain certain positions
  • pain in some women, due to vaginal dryness or skin changes
  • muscle weakness, joint pain or stiffness that may be present
  • changes in mood, depression, anxiety and/or negative body image, which reduce sex drive

Medical studies and findings

In one study, 106 patients with systemic lupus erythematosus (SLE or “lupus”) were interviewed to find out the impact of illness perceptions on sexual functioning. Almost one half of those interviewed reported that lupus had a negative influence on their sexual functioning. The emotional and psychological effects of illness had a greater impact on sexual functioning in this study than did the medical factors. [Daleboudt et al. J Psychosomatic Res 2013;74:260.]

In another study of 120 women with lupus, decreased sexual functioning was associated with multiple psychological factors that included depression and psychological distress directly related to their illness. [(Garcia-Morales et al. Lupus 2013;22:987.]

Both men and women may be affected and have been studied. A higher rate of impotence is reported in men with lupus, for example, than among those who do not have the disease. [Folomeev et al. J Rheumatol 1990;17:117.]

Ways to improve sexual function

Sexual health is often a neglected quality of life area in people with chronic disease, and it is not routinely addressed by physicians.

In one survey in the United Kingdom of 813 physicians, registered nurses, and physical and occupational therapists:

  • 94% said they were unlikely to discuss sexual issues with patients.
  • 86% said that staff members were poorly trained in this area.
  • 90% agreed that addressing sexual issues should be part of holistic care of patients.

Dr. Sammaritano emphasized that patients should speak about sexual problems with their healthcare providers: rheumatologist, Ob/Gyn, primary care physician, and mental health care professional.

Further, she stated, the following factors can help to improve conditions toward better sexual health:

  • better control of disease, which may reduce pain and other associated symptoms. (Speak with your physician about the possibility of adjusting medications which may be creating side effects that impact sexual functioning.)
  • physical therapy to help improve physical functioning
  • use of lubricants if underlying disease or medications contribute to vaginal dryness
  • address mood and body image issues with a psychotherapist or psychiatrist

Contraception issues

Dr. Sammaritano discussed important concerns for safe and effective birth control for women with myositis:

Patients may wish to avoid unplanned pregnancy for personal reasons. They might be using medications that may cause birth defects, such as mycophenalate (CellCept), or, disease may be active, which can impact pregnancy experience and outcome in any CTDs. It is ideal to wait for your disease to be quiet before conceiving.

Women with chronic medical problems are less likely to use effective contraception. One observational study reviewed insurance prescription claims of 11, 649 reproductive-aged (21 to 45) women in Michigan from 2004-2009. Focusing on women with various chronic medical diseases (asthma, diabetes, obesity, rheumatoid arthritis, inflammatory bowel disease, and lupus among them), the study found that:

  • 16% had more than one chronic condition.
  • Prescriptions for contraception were given to 33.5% with a chronic condition versus 41.1% without a chronic condition.

Effective methods of birth control measured at one year

Even though there is a greater risk for complications with an unplanned pregnancy, women with chronic conditions are less likely to receive prescription contraception. [DeNoble et al. Obstet Gynecol 2014;123 1213.]

Dr. Sammaritano went on to note that there is evidence that effective contraception is underused by rheumatology patients:

  • One Swedish study found that 27% rheumatic disease patients “at risk for unplanned pregnancy” and using teratogenic drugs (those that can cause birth defects), such as methotrexate were not using any form of contraception. Most of those not using contraception were aware of the potential for birth defects. [Østensen et al. J Rheumatol 2007;34:1266.]
  • A US survey of pediatric rheumatology clinic physicians found that the underuse of effective contraception “may be due to lack of screening and counseling by physicians, which may also be due to lack of time, discomfort with the topic, and uncertainty about the rheumatologist’s role in screening.” [Britto et al. Arch Ped Adolesc Med 2000;164:47.]

Dr. Sammaritano stated that the most effective methods of birth control are long-acting reversible contraception (LARC). These include the progestin implant, (inserted under the skin), or an intrauterine device (IUD). The rate of pregnancy using this method is less than 1 in 100. A benefit of LARCs is that after insertion or placement, the patient does not need to use or take any other contraception.

LARCs are recommended even for adolescents by the American Academy of Pediatrics: “First-line contraceptive choice for adolescents who choose not to be abstinent is a long-acting reversible contraceptive. The past decade has demonstrated that LARC’s, which provide 3 to 10 years of contraception, are safe for adolescents.” [American Academy of Pediatrics. Committee on Adolescence. Contraception in adolescents. Pediatrics 2014 134(4):e1244.]

The rate of pregnancy is closer to 1 in 10 when using injectables (example: depo medroxy progesterone acetate, or DMPA), or the estrogen-progestin pill, patch or ring. This may be because a woman, or her partner, must remember to use or maintain these methods of birth control on a regular basis.

Condoms, withdrawal and fertility awareness-based methods are considered less effective, resulting in up to 1 in 5 pregnancies per 100 women.

Choosing contraception when you have a connective tissue disease

There are a variety of safe and effective forms of contraception for women with CTD. The factors to consider are:

  • safety
  • effectiveness
  • personal preference for each individual

It is important to note, Dr. Sammaritano said, that some forms of contraception are not suggested for certain groups of patients. Contraceptives that contain estrogen should not be used by women with positive antiphospholipid (aPL) antibodies, which are autoantibodies associated with increased risk of blood clots and recurrent miscarriage. In combination with estrogen, the risk of blood clots becomes even higher. Although aPL antibodies are reported in one third of patients with lupus, they are very rarely found in patients with myositis.

Additional information for choosing contraception

IUD and progestin implant

  • There is no evidence of increased risk for infection with IUDs in patients with connective tissue disease, including those who are on immunosuppressive medications.
  • This is based on studies that show no increased risk of infection in HIV/AIDS patients or in transplant patients on similar immunosuppressive medications.
  • There are no data available about the progestin implant for patients with CTD.

DMPA Injections

There is concern about increased risk of osteoporosis, as one study indicated there was a 7.5% decrease in bone density after two years of use in healthy patients. Therefore, long-term use should be avoided for patients on corticosteroids or with a diagnosis of osteoporosis.

Methods of contraception with benefits and disadvantages

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Method of Contraception Benefits Disadvantages
Condoms - Lowers risk of sexually transmitted diseases
- No prescription needed
- Lower effectiveness
IUD - Very effective
- Stays in place for 3 to 10 years
- OK for adolescents
- Levonorgestrel IUD decreases menstrual blood flow and cramps
- Copper IUD may increase menstrual blood flow and cramps
Combined oral contraceptives
(pill, patch or vaginal ring)
- Effective
- Convenient
- Bedrest increases risk of clots
- Potential interactions with other medications:
- Mycophenealate (CellCept): must use IUD or two forms of contraception
Progestin-only contraceptive
(pill, DMPA, implant, IUD)
- DMPA more effective, easier than pill
- Reduces menstrual blood flow
- Implant every 3 years
- Very effective
- DMPA (not the pill) may decrease bone density
- Pill may cause irregular bleeding

Fertility and infertility

Infertility is defined as the inability of a couple to conceive a child within one year while practicing frequent intercourse and not using contraception.

  • Infertility affects 20% of couples in the United States. Causes include:
    • infertility in the male (35%)
    • ovulatory dysfunction (15%)
    • tubal-peritoneal disease (35%)
    • anti-sperm antibodies (5%)
    • unexplained (10%)
  • 40% of affected couples have more than two of the above factors.

Causes of infertility in patients with connective tissue disease

  • Age. Fertility declines with age. Since women with CTD are advised to wait for their disease to quiet down before becoming pregnant, the delay increases the age at which they attempt to conceive.
  • Disease-related:
    • Menstrual disturbance is reported with active disease. According to one study, half of patients with SLE experienced menstrual changes associated with active disease. [Pasoto et al. Lupus 2002;11:175.]
  • Medication-induced:
    • For females, premature ovarian failure (POF) was associated with taking higher total dose (more than 7 mg) of cyclophosphamide (Cytoxan) and older age (more than 30 years old).
    • Males experienced impaired sperm development (spermatogenesis).
    • High doses of prednisone may temporarily interfere with reproductive hormone feedback. This can alter the normal menstrual cycle and interfere with conception.
    • Nonsteroidal anti-inflammatory drugs (NSAIDs) may prevent egg release at ovulation. Twenty-five percent of healthy women did not ovulate when taking celecoxib (Celebrex). Ovulation was blocked in 25% to 75% of women taking NSAIDs for musculoskeletal pain [Edelman et al. Contraception 2013;87:352; Salman et al. EULAR 2015 abstract OP0131.]

Fertility in women with inflammatory myopathies

Several reports looked at very small groups of patients who developed myositis before or during their childbearing years and found that:

  • There was an increase in never having children, compared to the general population. [King CR, Chow S. Obstet Gynecol 1985;66:589-92.]
  • There was a possible reduction in fertility rate. [Gutierrez G, Dagnino R, Mintz G. Arthritis Rheum 1984;27:291-4.]

It is understandable that concerns can lead to decreased family size among patients with rheumatic disease, given disease activity, treatments, impaired sexual function, and personal choices. As one example, Dr. Sammaritano cited factors in a study that involved women with lupus that influenced decision-making regarding pregnancy. Factors included:

  • Risk of flare during pregnancy.
  • Recommendation to wait to become pregnant until 6 months after a flare.
  • Risk of miscarriage/stillbirth and maternal complications.
  • Taking medications considered unsafe for pregnancy.
  • Risk of CTD or developmental issues in the child. While rare, this is a common concern for rheumatic disease patients. CTDs are not “passed on” as genetic diseases are, and so the likelihood of a child developing the mother’s disease is low, but still slightly higher than that of the general population. Developmental issues may be related to very early delivery, associated with pregnancy complications.
  • Risk of preterm/small-for-dates baby. [Vinet et al. Arthritis Care Res 2008; 59:1656.]

Further, in another survey of 114 women with lupus, 27% viewed lupus as a barrier to childbearing. [Stein et al J Rheumatol 1986;13:570.]

In another study that looked at the psychological impact of lupus on family planning, 45% reported anxiety about pregnancy, and 23% reported that lupus interfered with the ability to care for family.

Fertility options for patients with connective tissue disease

Freezing eggs (oocyte cryopreservation)

  • Eggs can be fertilized later with partner’s sperm.
  • This gives women the option of having biological children later.

Risks and advantages of freezing eggs

  • It requires stimulating the ovaries: The high estrogen levels may cause or worsen flare (in lupus) or increase risk of blood clots (in any patient).
  • This is an option for patients with stable disease who are concerned with age-related infertility.

Dr. Sammaritano cited a recent summary in this field that stated that:

  • The first step physicians should take to help patients avoid unintended infertility is to monitor sexual function and family planning routinely in all patients of fertile age to detect problems related to reproductive health.
  • Improvement of reproductive health is achieved by effective treatment of rheumatic disease, comprehensive counseling and, if needed, referral to specialists in sexual medicine and infertility.

    [Østensen M. Sexual and reproductive health in rheumatic disease. Nature Reviews Rheumatology. 2017 Aug;13(8):485.]

Pregnancy and myositis

There are very few studies and (patient participants per study) on health complications in mothers and fetuses in pregnancies in women with myositis. Most are case reports. This is because autoimmune myositis is rare, diverse (it can include dermatomyositis, polymyositis or overlap syndrome), and often diagnosed later in life. Only 14% of patients with myositis develop the disease during childbearing years.

Review of the medical literature

New disease onset during pregnancy:

  • The earlier the disease presents during pregnancy, the greater the likelihood of a poor outcome.
  • In a recent review, all pregnancy losses occurred in pregnancies with disease onset occurring prior to the third trimester.

Pregnancy with pre-existing myositis:

  • Of 48 reported cases with pre-existing myositis in one review, 21 (44%) were complicated by flare during the pregnancy.

Death of the female myositis patients during pregnancy or delivery is very rare. Systemic review of myositis pregnancy case reports suggests:

  • Disease activity during pregnancy is associated with increased risk of unfavorable pregnancy outcome. This resulted in a 34% rate of pregnancy loss, which included three elective pregnancy terminations.
  • Treatment during pregnancy and periods where myositis symptoms are quiet may be associated with a reduced chance of stillbirth.
  • In the 27 reported pregnancies without disease activity, there were five (18%) losses. [DiMartino S. Contraception and Pregnancy in Rheumatic Diseases, 2014.]

A recent “big data” study of pregnancy outcomes in dermatomyositis (DM) and polymyositis (PM) used the Nationwide Inpatient Sample (NIS) database (1993-2007). NIS is a database that uses ICD coding (international classification of diseases coding for insurance billing purposes) from representative hospitals across the United States.

  • 853 women with dermatomyositis or polymyositis were identified as having delivery-associated hospitalizations.
  • Controls (groups used for comparison; in this case, those without DM or PM of similar ages) were from the general obstetric population.
  • Pregnancy outcomes were measured using the following factors:
    • hospital length of stay
    • hypertensive disorders including preeclampsia and eclampsia
    • premature rupture of membranes, intrauterine growth restriction (IUGR), and cesarean delivery
  • Results:
    • Patients with DM/PM had an average longer length of stay.
    • There was an increased risk of hypertensive disorders compared to control groups.

Neonatal outcomes of mothers with myositis

  • Outcomes for newborns is generally good. The primary complications primarily result from premature birth and include being small for gestational age.
  • To date, the rash that is a symptom of dermatomyositis has not been reported in any newborn of a mother who has dermatomyositis or polymyositis.
  • One publication reported elevated CK (muscle enzyme) levels in two infants (one two months old, the other four months old). This raised the question of whether there was a passive transfer of autoimmune antibodies from mother to child. However, the babies were not weak, and it was unclear whether the source of CK levels originated in the mothers or in the babies themselves. [Messina S, Fagiolari G, Lamperti C, Cavaletti G, Prelle A, Scarlato G, et al. Women with pregnancy-related polymyositis and high serum CK levels in the newborn. Neurology 2002;58:482–484.]

Dr. Sammaritano stressed the importance of pre-pregnancy evaluation, which includes the following considerations:

  • Disease damage from myositis may rarely make pregnancy unsafe for the mother. Severe internal organ damage is rare in myositis, but severe lung fibrosis may be a complicating factor.
  • It is best to wait until your disease has quieted or been controlled, or to treat for the same, prior to conceiving a child.
  • Your current medications may need to be changed to those deemed safer for when you are pregnant.
  • Check for autoantibodies. antiphospholipid (aPL) and anti-Ro/La antibodies are rare (4% to 30%) in myositis patients. No specific type of myositis-related antibodies has been clearly associated with risk for pregnancy complications.

Medication use in women who are pregnant and/or breastfeeding

Dr. Sammaritano stated that, in reality, most pregnant women are exposed to medications.

  • Only 50% of the approximately six million pregnancies per year in the US are planned. Because of this, women may unknowingly take medication(s) during pregnancy. Further, 90% of women in the US take at least one medication during pregnancy, and 50% of women take 3 to 4 medications during pregnancy.
  • Women may need medication for pregnancy-induced conditions, chronic conditions (such as autoimmune disease), and conditions that may occur as a result of existing illness.

Dr. Sammaritano noted that there is a lack of sufficient data on how drugs are metabolized, transferred to the fetus, and what the effects are on the fetus; this leads to increased fear of what effects that medication might have on the fetus. It should be noted that birth defects can have causes other than medication.

Myositis medications and associated risks during pregnancy

Low- to moderate-risk medications

  • hydroxychloroquine (Plaquenil)
  • nonsteroidal anti-inflammatory drugs (NSAIDs) – should be avoided during third trimester
  • prednisone/prednisolone – very little crosses the placenta to the fetus
  • azathioprine (Imuran) – no concern for birth defects, but there is slightly increased risk for premature birth
  • IVIG – considered safe to use throughout pregnancy

High-risk medications during pregnancy to be avoided due to potential risk for birth defects

  • cyclophosphamide (Cytoxan)
  • mycophenolate mofetil (CellCept)
  • methotrexate

Medication with uncertain risks

  • rituximab (Rituxan): In 21 live births in women treated with Rituxan during pregnancy, 11 newborns showed some blood abnormalities that were not associated with infection. Four newborns had infections. [Chakravarty et al. Blood 2011;117:1499.]

Myositis medications during breastfeeding (including pumping)

Low- to moderate-risk medications

  • nonsteroidal anti-inflammatory drugs (NSAIDs) – ibuprofen is preferred over naproxen or others
  • prednisone/prednisolone – if taking more than 20mg, wait four hours before breastfeeding
  • hydroxychloroquine (Plaquenil)
  • azathioprine (Imuran) – insignificant amount is transferred to breastmilk
  • IVIG – little immunoglobulin is transferred
  • rituximab (Rituxan) – little immunoglobulin is transferred

High risk medications to be avoided during breastfeeding or pumping

  • cyclophosphamide (Cytoxan)
  • mycophenalate (CellCept)
  • methotrexate

Key points to remember

In summary, Dr. Sammaritano highlighted the following:

  • Discuss matters of sexual health with your health care providers, who can help you make the best decisions for you.
  • Make sure that your doctors (rheumatologist and obstetrician-gynecologist), are communicating with each other about your care.
  • Let them know if you are planning to conceive.

It is important to be aware of the factors below, as they are interconnected and can affect fertility and pregnancy outcome:

  • For pregnancy prevention, use the most effective, and safest, methods available for you.
  • It is important to be aware that cyclophosphamide (Cytoxan) can affect fertility (both men and women) and should be avoided if planning to conceive.
  • It is recommended to wait until your disease is stable for several months before freezing eggs or undergoing invitro fertilization
  • Planning ahead is important when considering pregnancy. The following can all lead to better outcomes for mother, baby and in breastfeeding:
    • Waiting for quiet disease (that is, a period in which you are not in a flare of your disease)
    • Taking low-risk medications
    • Assessing risk factors

The original presentation took place on May 14, 2019.

Summary by Suzan Fischbein, LCSW, Senior Social Work Coordinator, HSS Myositis Support Program.


Lisa R. Sammaritano, MD
Attending Physician, Hospital for Special Surgery
Professor of Clinical Medicine, Weill Cornell Medicine

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