Pregnant women with arthritis receiving 'mixed messages' on DMARD safety
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Women with inflammatory arthritis may be rejecting or discontinuing medications during pregnancy and lactation, due, in part, to inconsistent information from their providers about the safety of arthritis medications, according to findings in ACR Open Rheumatology.
Since the publication of key studies in 2011 and 2012, it has been well-established that disease-modifying anti-rheumatic drugs are safe to use throughout the reproductive process. However, in a recent ArthritisPower/CreakyJoints survey of women with inflammatory arthritis who had at least one pregnancy after diagnosis, 80% reported discontinuing these drugs in preparation for pregnancy, during pregnancy or while breastfeeding.
“What our study highlighted is that people are getting mixed messages from clinicians and specialty groups,” Mehret Birru-Talabi, MD, PhD, told Healio Rheumatology. Source Adobe Stock
“Why so many pregnant women with inflammatory arthritis still discontinue their medications is a multifactorial issue,” Mehret Birru-Talabi, MD, PhD, associate program director of the University of Pittsburgh Medical Center Rheumatology Fellowship Training Program and medical advisor to CreakyJoints, told Healio Rheumatology.
One factor is direct-to-consumer advertising, which includes “long lists of side effects,” according to Birru-Talabi, who was lead author on the paper. “People are just quite conservative when it comes to medication safety surrounding pregnancy in the first place,” she said. “When you see some of these ads, the fear is understandable.”
A companion factor is the wealth of information and misinformation available to patients online. Yet another key factor, for Birru-Talabi, is that patients with inflammatory arthritis often are under the care of several doctors, which can lead to conflicting advice on a number of topics, including medication safety.
This highlights a more concerning result from the study, which showed 68% of respondents discontinued their TNF inhibitor on the advice of their physician, while 14% stopped this drug because there was no consensus among their providers about the drug’s safety.
“What our study highlighted is that people are getting mixed messages from clinicians and specialty groups,” Birru-Talabi said. “One provider may have up-to-date information and provide good advice, whereas another provider might have different knowledge.”
It is for this reason that one of the paper’s other authors, Whitney White, PharmD, clinical pharmacy specialist at Birmingham VA Medical Center and member of CreakyJoints, urged rheumatologists to talk about these issues with both women and men of reproductive age as a part of routine clinical practice, and not only when they are pregnant or planning for a family in the near future.
“Patients see their rheumatologist as a leading provider on these issues,” she said in an interview. “If you can address the topic of medications before pregnancy, you can weed out potential issues and make sure the patient is making the right choices.”
Medication Avoidance
Other findings from the data set showed that 40% of women believe that no medications are safe to use during pregnancy. Just 41% believed that prednisone is safe, while only 15% believed TNF inhibitors are safe, 11% for NSAIDs, 9% for hydroxychloroquine and 2% for acetaminophen.
No respondents believed that sulfasalazine is a safe medication for pregnancy. Similarly, no women selected methotrexate or leflunomide as safe, either.
“Women are making decisions during pregnancy to sacrifice their own physical health to minimize toxicities that could affect the developing fetus,” Birru-Talabi said. “But what they need to understand is that, by under-medicating, they are at risk for outcomes that could lead to complications in their newborn, like low fetal birth weight.”
A critical facet of this discussion is that many women believe that their arthritis will go into remission, low disease activity or be resolved altogether during pregnancy. While many women do, in fact, experience improvement in their disease, it is not universal, according to White. “A lot of what came from the work we have done is that it is very patient-specific,” she said.
Even patients who experience remission during pregnancy may experience a “severe flare” within months of delivery, according to Birru-Talabi. She added that timing is essential. “If they go off medications during pregnancy, they need to reinitiate at some point,” she said. “It can take a while for some of our medications to start working. If a flare happens, it can become a challenge to get the disease back under control.”
It is for all of these reasons that women need to understand — or be told by their rheumatologist — that the medications used to treat their disease can and, in most cases, should be used throughout the reproductive process. But providers are seeing an increasing number of patients walking into the clinic with dubious information.
Flood of Misinformation
Many practicing physicians lament the daily tsunami of misinformation available on the internet, but Birru-Talabi had a slightly different take. “People have access to a lot more information than they used to, which can be a tremendous plus because they do not have to rely solely on what their clinician has to say,” she said, noting that some 60% of patients spend time online researching medical topics.
When a patient cites a source that is not evidence-based or peer-reviewed, Birru-Talabi sees this as a teachable moment. “I can show my patients the difference between one person’s opinion and a good, well designed, rigorous clinical trial,” she said. “When you understand where patients are getting their information, this can help you direct them toward better information.”
In addition to CreakyJoints, the ArthritisPower website has a wealth of evidence-based resources on these topics, as does the Mother To Baby website. “I have incorporated a number of these materials into my pamphlet,” Birru-Talabi said. “My patients know that I have vetted them, and that they are coming from a source they trust.”
The 2020 American College of Rheumatology guidelines for reproductive health in patients with rheumatic and musculoskeletal diseases also can be helpful in standardizing available information to providers and patients. But it can take time for such guidelines to seep into everyday practice.
Mixed Messages
The downside of patients with rheumatic and autoimmune diseases being treated by more than one clinician is that they often feel like they are caught in the middle, according to Birru-Talabi. “What patients want and need and expect is that their providers will have considered their individual case, collaborated, and come up with a united message and the best plan of action,” she said. “That is the direction this needs to go in order to meet patient needs.”
It is important to understand that when patients are discontinuing their medications erroneously or unnecessarily, it leads not only to poorer patient outcomes, but “confusion, frustration, anxiety and fear,” according to Birru-Talabi.
“Patients and providers alike also need to understand that you should have controlled disease or remission before you even try to get pregnant,” White added.
White discussed another important reason for taking a proactive approach. “People often have unintended pregnancies,” she said. “This is why it is so important to make reproductive issues a natural part of disease treatment overall.”
Many rheumatologists cite time constraints as a reason for failing to address these issues. White suggested that a simple yes-no question at each visit is a good place to start. “Are you planning on getting pregnant in the next year?” she said. “If yes, there is an algorithm.”
That algorithm may include a follow-up appointment to discuss reproduction in further detail, leveraging support staff to make appointments with other relevant practitioners and steering the patient in the direction of evidence-based information. “This can lead to patient empowerment, where the doctor and patient are working together using the same information,” White said.
Such a shared decision-making approach is critical not only for pregnancy but also to meet the physical and emotional demands of caring for a newborn.
Raising Children with Arthritis
Further data from the study showed that 79% of respondents breastfed for an average duration of 7 months (range, <4 weeks to 29 months). The majority of the cohort (78%) avoided treatment with disease-modifying antirheumatic drugs or prednisone while breastfeeding, according to the findings.
An important data point showed that one-third of women who breastfed described the experience as “physically challenging” due to arthritis.
As a clinician, a patient with inflammatory arthritis and a mother of three, White understands the importance of addressing these challenges. “We have to understand the priorities of each patient,” she said, and suggested that some patients may not need to be “fully functional” to raise and breastfeed a newborn. “Some patients can live with a certain level of pain and fatigue because they do not want to deal with side effects.”
But White stressed that the provider needs to guide the patient and step in when discontinuing medication becomes unsafe for either mother or child. She also stressed that both doctor and patient should make use of the therapies and tools that are currently available.
“With biologics and conventional DMARDs, patients have an increasing number of therapies,” White said. “We also have an increasing amount of data on those therapies in pregnancy and lactation. It is important to communicate to our patients that they have options.”
For more information:
Whitney White, PharmD, can be reached at 700 South 19th Street, Birmingham, AL 35233; email: JDaitch@ghlf.org.
Mehret Birru-Talabi, MD, PhD, can be reached at 1218 Scaife Hall, 3550 Terrace Street
; email: JDaitch@ghlf.org.
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Birru-Talabi M, et al. ACR Open Rheum. 2021;doi: 10.1002/acr2.11240.
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