On Sept. 14, in recognition of the 6th annual Rheumatic Disease Awareness Month, the ACR’s Simple Tasks campaign hosted Rheum4You: Reproductive Health & Rheumatic Disease, an informational webinar on reproductive health, pregnancy and parenting for patients with rheumatic disease and the medical professionals who care for them.
Six experts came together to address these topics. And if one theme stood out during the event, it was: plan.
“Most women with rheumatic diseases can have successful pregnancies, and most people with rheumatic diseases can have children, if desired,” said Lisa Sammaritano, MD, professor of clinical medicine at Weill Cornell Medicine, attending physician at the Hospital for Special Surgery, New York, and director of the Rheumatology Reproductive Health Program at the Barbara Volcker Center for Women and Rheumatic Diseases. But, she emphasized, for patients with rheumatic diseases who want to have a family, rheumatologists and rheumatology professionals really do need to work with them on family planning.
Dr. Sammaritano was joined on the webinar by Arthur Kavanaugh, MD, professor of medicine at the University of California, San Diego; Megan Clowse, MD, MPH, associate professor of medicine in the Division of Rheumatology and Immunology at Duke University Medical Center, Durham, N.C., and director of the Duke Autoimmunity in Pregnancy Clinic; Mariah Leach, founder of the patient advocacy group Mamas Facing Forward, Denver; and Rebecca Gillett, an occupational therapist, director of content strategy and planning for the Arthritis Foundation, Atlanta, and host of the “Live Yes! with Arthritis” podcast. Both Ms. Leach and Ms. Gillett also happen to live with rheumatoid arthritis themselves.
Event host Cheryl Crow, MOT, OTR/L, occupational therapist, rheumatology patient, podcast host and founder of the multi-media platform, Arthritis Life, Kirkland, Wash., began the event by saying, “You [may] feel alone at times in your journey … Your rheumatology team is there to support you, and for many people, [to ensure you have] as safe and healthy a pregnancy, and successful a pregnancy, as possible.”
Here is what the speakers covered, and the advice they shared. The evening was organized into three segments: family planning, pregnancy and parenting.
Contraception, Disease Control & Medications
“Our goal in thinking about family planning is to plan for well-controlled disease on pregnancy-compatible medication, with a pre-pregnancy evaluation to identify risks and make recommendations about monitoring and therapy,” said Dr. Sammaritano. “Family planning, in general, usually requires contraception and the safe use of some of our rheumatology medications.”
The safest and most effective options most rheumatology patients can use to control when they become pregnant are long-acting reversible contraceptives, including intrauterine devices (IUDs) and devices implanted under the skin, Dr. Sammaritano explained. Condom use alone carries a high risk of unintended pregnancy. Hormone-based pills and patches may be good options for some patients, but those at high risk for blood clots should avoid birth control options with estrogen. These patients include those with highly active systemic lupus erythematosus (SLE) and those with antiphospholipid (aPL) antibodies.
According to the 2020 ACR Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases, for which Dr. Sammaritano was the lead author, most patients with rheumatic diseases underuse effective contraception and may experience unplanned pregnancies. This situation exposes them to risks, such as worsened disease activity, that can threaten maternal health and well-being and lead to adverse pregnancy outcomes, such as pregnancy loss, severe prematurity and limited fetal growth. Some medications used to control rheumatic disease can also result in birth defects if taken during pregnancy.1
“Having really active disease, particularly in your kidneys, increases your risk for pregnancy loss. Having hypertension or high blood pressure that is not well controlled with medications, increases the risk. … Antiphospholipid syndrome … increases the risk of pregnancy loss,” said Dr. Clowse. Most of these risks can be managed, she continued, noting the best course of action is to “delay a pregnancy until you’re sure that you’re [in the] safest spot.”
Emergency contraception, such as over-the-counter progesterone pills, is considered safe for all patients with rheumatic disease, especially given the risks of unplanned pregnancy to some patients.
However, some patients with rheumatic diseases may experience reduced fertility because of their disease or medications, and this, too, may warrant planning, the speakers said. Of the medications used to control disease activity, cyclophosphamide is known to reduce fertility in women because it can cause ovarian failure. Some non-steroidal anti-inflammatory drugs (NSAIDs) may transiently prevent ovulation, and high-dose corticosteroids can also interfere with ovulation and successful conception.
“Methotrexate, mycophenolate, azathioprine, tacrolimus and our biologic medications do not have a negative effect on fertility,” Dr. Sammaritano said.
However, not all of these medications are safe to use during pregnancy. Example: Mycophenolate and methotrexate are teratogens, which can cause birth defects or pregnancy loss if taken during embryonic or fetal development.
Men who want families, said Dr. Kavanaugh, should avoid medications that mutate sperm or interfere with its production. These treatments tend to be chemotherapeutic agents, of which cyclophosphamide is the most commonly used to treat rheumatic disease. Men should consider preserving their sperm if they need to go on the drug.
“Hydroxychloroquine, sulfasalazine, azathioprine, cyclosporine, tacrolimus, colchicine, all of the TNF [tumor necrosis factor] inhibitors and prednisone are all considered pregnancy compatible. There are data for all of those showing they are safe in pregnancy,” said Dr. Clowse, also a co-author of the 2020 ACR guideline.
Of the more than 600 pregnancies Dr. Clowse has managed in patients with rheumatic diseases, 90–95% are prescribed medication on the list above.
“All of our data really suggest that taking one of these medications, if it controls your disease, gives you a better chance of having a live birth, as well as having a baby delivered at term—all the way to their due date, or close to their due date,” she said.
For other medications, patients should consult with their doctors, given that safety data may not yet be available.
Some patients may also seek medical procedures or interventions to help them become pregnant, including in vitro fertilization, egg or sperm freezing and fertility medication. In most patients with quiet disease, according to the 2020 ACR guideline, assisted reproductive technologies can be strongly recommended. However, for patients with SLE or who are aPL positive, certain procedures carry additional risks because they may lead to potentially life-threatening lupus flares or blood clots. Patients and their providers should consult the guideline and discuss safety before proceeding.
According to a recent cross-sectional analysis from the Netherlands, men with inflammatory arthritis tend to have fewer children than the general population, especially when diagnosed at age 30 or younger.2
“This speaks to the importance of reproductive health, certainly from a male perspective,” said Dr. Kavanaugh, who also co-authored the 2020 ACR guideline. He recommended men have their disease under control before trying to conceive and that they discuss their circumstances with their doctors.
Among the limitations when it comes to guidance for patients with rheumatic diseases is a lack of comprehensive clinical data pertaining to many aspects of reproductive health. The guideline relied on Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology to rate the quality of evidence when making recommendations. The guideline authors also used group consensus to grade the strength of the recommendations. From this process, 12 good practice statements and 131 graded recommendations emerged for reproductive healthcare in patients with rheumatic diseases. The intent of the guideline is to inform a shared decision-making process between patients and their providers.
Pregnancy
In addition to consulting a physician regarding pregnancy-safe medications, patients with rheumatic diseases should consider other aspects of health and well-being, the experts emphasized.
Ms. Gillett’s recommendations focused on pain management. “Learn how to protect your joints, before you have the baby,” she said. “It changes over time; it changes over the course of your disease—whether you’re pregnant or not. But talk to your doctor about the pain that you’re having, things that you can do and ask for a referral to [an] occupational therapist or a hand therapist or a physical therapist. … I highly recommend you ask your doctor.”
A visit to an occupational therapist or physical therapist may also be warranted because pregnancy can alter how patients complete daily tasks as their body changes and center of mass shifts. These professionals can also help with strategies after the baby arrives. Example: Occupational therapists can “show you how to avoid putting your joints in a position that may cause further inflammation and swelling,” Ms. Gillett said.
Also, good sleep and exercise or physical activity routines are important to develop during pregnancy, both for pain management and overall health.
“One key thing that I want to make clear is that, as a woman living with rheumatic disease, you do actually have some control over how your pregnancy goes,” said Dr. Clowse. “The key to that is planning.”
Post-Pregnancy & Life with a Newborn
Ms. Leach was 25 when she was diagnosed with rheumatoid arthritis, and all three of her children—the oldest of whom is 9—were conceived after her diagnosis.
“Because there wasn’t much data available 10 years ago and no one was talking about this, my first pregnancy was completely unmedicated. The postpartum flare made breastfeeding extremely difficult, and I was advised to stop breastfeeding and restart my medication,” she said.
By Ms. Leach’s third pregnancy, she was able to stay on her biologic treatment, experienced virtually no postpartum flare and was able to make her own breastfeeding choices.
“I think it’s really important to know that you do not have to choose between your own body and your baby,” said Dr. Clowse. “Almost every one of our medications is compatible with breastfeeding.”
Ms. Leach, given the range of experiences she has had raising her children, including her 7-year-old and 3-year-old, also shared her best strategies for parenting.
First, she emphasized, parents should ensure their own physical and mental health. “My favorite metaphor for remembering how important it is to take care of myself is: You can’t pour from an empty cup,” Ms. Leach said. “It isn’t physically possible. If your cup is empty, you have to take the time and effort to fill it up before you can possibly share with anyone else.”
Second, in keeping with the broader theme of planning, is to prepare in advance for the arrival of your baby, especially because postpartum flares can happen. This preparation includes:
- Have a plan with your rheumatologist. “Just as important as it was to make that plan for getting pregnant, have a plan for how you’re going to deal with your health after pregnancy,” she said;
- Determine where your baby will sleep for the first few months of life to make nighttime feeding easier;
- Have options for safely putting the baby down throughout your house in the event of fatigue or pain;
- Schedule help from family members and friends. “If you’re going to have a postpartum flare, it’s probably going to happen six to eight weeks out, and that’s right about the time the help that’s offered right at the beginning starts to dry up,” Ms. Leach said;
- Select, and practice with, baby clothes and gear before the baby arrives. Clothing with small snaps and car seats with intricate straps and buckles can be difficult to operate with arthritis pain; and
- Plan to use a hands-free baby carrier that keeps the baby close, especially at times when holding them may be difficult due to disease activity.
“Connect with other parents who understand the unique challenges of parenting with a chronic illness, whether that’s in real life or on social media,” Ms. Leach added.
Kelly April Tyrrell writes about health, science and health policy. She lives in Madison, Wis.
References
- Sammaritano LR, Bermas BL, Chakravarty EE, et al. 2020 American College of Rheumatology Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases. Arthritis Rheumatol. 2020 Apr. 72(4):529–556.
- Fernando Perez-Garcia L, Röder E, Goekoop RJ, et al. Impaired fertility in men diagnosed with inflammatory arthritis: Results of a large multicentre study (iFAME-Fertility). Ann Rheum Dis. 2021 Aug 9;annrheumdis-2021-220709. Online ahead of print.
