Kristine was 19 years old when she was diagnosed with rheumatoid arthritis (RA). For the next seven years, her reproductive health was never part of the conversation with her care team — until the year she got engaged and started thinking about having children.
What followed was a journey filled with medical surprises, pregnancy losses, and hard-won lessons about the power of a coordinated care team.
Three Losses, and a System That Wasn’t Listening
Kristine had three early miscarriages before her first successful pregnancy. Each one brought new heartbreak, along with new gaps in her care.
“The first did not feel connected to my rheumatic disease,” Kristine shares, “it felt more like an introduction to what ‘trying to get pregnant’ really is. No one talks about how you can feel completely elated one day, craving cauliflower tacos, celebrating plans with your cousins, and then the next day, with so many pictures of the future dashed, unable to get out of bed.”
After her second loss, she was told by a resident that two miscarriages weren’t enough to take seriously, and to come back when she’d had three or four.
It was only after her third loss, bleeding in an emergency room with suspicions of an ectopic pregnancy, that she finally met a supportive OB-GYN who looked at her full history and said what she needed to hear:
“The problem wasn’t me or my medical history.
It was that all along, the healthcare system had failed me.
I should never have been left alone to wonder and wait for another loss.”
-Kristine, mother of two who lives with rheumatoid arthritis
Looking back, she wishes she hadn’t had to discover it on her own.
Reproductive health looks different for everyone. This article walks through what people with rheumatic conditions need to know — from planning a pregnancy and managing medications safely, to navigating loss and knowing which questions to bring to your care team.
How Your Condition Can Affect Reproductive Health
Rheumatic diseases and the medications used to treat them can affect fertility, pregnancy outcomes, and the safety of certain contraceptives. This doesn’t mean pregnancy is off the table — far from it. But it does mean that reproductive health planning is an important part of managing your condition.
One of the most important factors is disease activity. Stable, well-controlled disease is linked to better outcomes across the board — including healthier pregnancies and fewer complications. This is why planning ahead matters so much.
Some rheumatic conditions are associated with a higher risk of developing antiphospholipid syndrome (APS), a condition in which the body produces antibodies that attack phospholipids, leading to abnormal blood clotting. This can raise the risk of pregnancy loss. The good news: APS is treatable once it’s diagnosed, and knowing your status can make a real difference.
Kristine learned this firsthand. After her first miscarriage, her rheumatologist checked her blood for APS biomarkers. The results came back borderline, leaving her and her care team in an uncertain place and without a clear roadmap for what to do next. It was a difficult, isolating experience.
“What I was learning at academic conferences did not match what my provider was recommending. And no matter how much information I gathered myself, I don’t have the clinical training of a medical doctor — so I had to decide whether or not to trust mine.”
Medications: The Most Important Thing to Know
The single most critical message when it comes to medications and reproductive health: never stop or change your medications on your own. At the same time, some medications do require action before pregnancy — and the earlier you know this, the more options you have.
Talk with your doctor about how the medications you are taking could impact pregnancy. Several commonly used rheumatic disease medications are harmful to a developing baby and must be stopped before trying to conceive. Examples include:
- Methotrexate: Stop at least 1–3 months before conception; requires folic acid supplementation during pregnancy
- Mycophenolate: Stop at least 6 weeks before conception
- Leflunomide: Stays in the body longer and sometimes requires a washout procedure before or during pregnancy; stopping alone may not be enough
If you discover you are pregnant while taking one of these medications, call your care team immediately.
Meanwhile, the evidence around biologics has grown significantly. Many biologics used to treat rheumatic conditions are now considered safe to continue during pregnancy, and in some cases, stopping them can lead to disease flares that carry their own risks. Kristine experienced this tension directly:
“Like most women who are started on methotrexate, I was told the standard ‘do not get pregnant on methotrexate.’ Which of course made me wonder years later — well, which of my medicines can I get pregnant on?”
That question — simple, reasonable, years in the making — had never come up in her care. It’s a question too many patients with rheumatic diseases have had to ask themselves, alone, at exactly the wrong time.
If you feel that gap between current evidence and your provider’s recommendations, that’s a signal to have a deeper conversation or to seek a second opinion. You deserve care that reflects the latest science.
Planning, Loss, and the Full Picture
Reproductive health looks different for everyone — and for people with rheumatic conditions, it can be especially layered. Here’s what to know across a few different scenarios.
If you are planning to conceive:
Aim for three to six months of stable, well-controlled disease before trying. Work with both your rheumatologist and a high-risk OB-GYN to review your medications, establish a monitoring plan, and understand what warning signs to watch for during pregnancy. Starting these conversations early gives you the most options.
If you have faced an unplanned pregnancy or ended a pregnancy:
Whatever your circumstances, you deserve care that takes your whole situation into account — without judgment.
Hormonal shifts after any pregnancy — including a loss or a termination — can trigger a disease flare. This is true even in early pregnancy, and it’s a medical reality your rheumatologist needs to know about. Let your care team know what you are going through so they can monitor your disease activity and adjust your treatment if needed. You should not have to manage a flare on top of everything else without support.
Emotionally, this can be an especially complex time. Grief, uncertainty, and physical symptoms can all arrive at once. If you are struggling, ask your care team for a referral to a mental health provider who has experience with chronic illness. You don’t have to sort through it alone.
What to Do Next
Navigating reproductive health with a rheumatic condition can feel overwhelming. But there are concrete steps you can take right now.
- Talk to your rheumatologist before making any changes to your medications — especially if you are thinking about becoming pregnant.
- Ask about blood tests, including an APS panel, if you have experienced one or more pregnancy losses.
- If you are planning to conceive, ask for a referral to a high-risk OB-GYN (i.e., Maternal Fetal Medicine specialist) who has experience working with people with autoimmune conditions.
- Seek a care team, not just a single provider. Kristine’s journey taught her that the best outcomes came when her rheumatologist, OB-GYN, and other specialists were working together.
Finding those providers may take time. “Do not hesitate to ‘shop around’ for a good fit,” Kristine advises other people living with autoimmune conditions and wanting reproductive care. “Feeling bad about leaving a clinic is nothing compared to your health — and the health of your future children.”
There is Reason for Hope
If you are in the middle of a hard season — waiting for answers, recovering from a loss, or trying to figure out what comes next — Kristine wants you to know that hope is real.
For her, it came from researchers and clinicians who have dedicated their careers to the intersection of rheumatic disease and reproductive health. It came from other patients who understood what she was going through in ways that clinical care simply couldn’t.
And it came from her partner, who showed up in the quiet ways that matter most. After her third pregnancy loss, he took her to the beach. He didn’t try to fix it or rush past it — he followed her lead and carried what she describes as “terrified optimism.” The kind of hope that doesn’t pretend everything is fine but keeps moving forward anyway.
You don’t have to navigate this alone. Support exists, and for many people who have walked this road before you, grief does, eventually, turn into hope.
And if you are looking for hope? There is a growing community of researchers, clinicians, and patients who are passionate about this exact intersection of rheumatic disease and reproductive care.
Has Reproductive Health Been Part of Your Rheumatic Disease Journey?
We want to hear from you. The University of Pittsburgh RESPOND study is looking at how reproductive health experiences — including pregnancy planning, contraception, pregnancy loss, and more — intersect with living with a rheumatic condition.
You may be eligible to participate if you:
- Have been diagnosed with a rheumatic or autoimmune condition
- Are between the ages of 18 and 45
- Have been pregnant since June 2021
Your experience matters. This research helps ensure that future patients get the care, information, and support they deserve from the start. Learn more and sign up: https://bit.ly/patientinterview
