This blog post summarises the key insights from the latest Virtual Education Session (VES) led by Dr Laura Hummers, an associate professor of medicine and co-director of John Hopkins Scleroderma Centre. She is also a clinical director in the division of Rheumatology, making her an incredible resource for all things Scleroderma. 

This article shares Laura’s in-depth look at pregnancy in women with scleroderma, highlighting key challenges and general differences. 

Laura was joined by Bridget Naughton, one of our incredible community members. Bridget has gone through two successful pregnancies after finding out she has Scleroderma, and she shared these experiences in this month’s VES.

For more free resources, access our in-depth and targeted information brochures here.

Bridget’s Journey Through Pregnancy with Scleroderma

Pregnancy can be a complex journey for anyone, but when you have scleroderma, it comes with its own unique considerations. For Bridget, her pregnancies posed different learning curves and experiences, both because of scleroderma and other factors.

Her first pregnancy, at age 33, involved close monitoring and a decision to go with a private OB specialising in high-risk pregnancies. Despite a smooth start, complications arose around the 28-week mark, leading to the early delivery of her daughter at 31 weeks. Although born small, her daughter thrived and caught up in development within a year and a half.

Bridget’s second pregnancy was influenced by additional factors such as fertility struggles and COVID-19. Despite initial challenges with egg reserves and a miscarriage, Bridget successfully conceived again with the help of a new fertility specialist and was placed on a specific regimen including steroids and blood thinners. Her second pregnancy reached 37 weeks, and she welcomed a healthy baby, experiencing a significant difference in the baby’s development compared to the first.

Some key takeaways to consider from Bridget’s experiences include:

Specialised Care: When we go through a pregnancy with scleroderma, close consultation with both an OB and a rheumatologist is crucial. You may find that this results in more check-ups than normal, so ensure you’re keeping open discourse with your doctors to stay aware and feel as comfortable as possible. 

Monitoring and Interventions: Frequent scans and interventions like steroids and blood thinners can be necessary, depending on individual circumstances and pregnancy progression. Again, open conversation can ensure you’re informed to make decisions that are best for you and your baby.

Fertility and Pregnancy Challenges: Managing scleroderma can impact fertility and complicate pregnancies, but with the right support and planning, successful outcomes are achievable! If you’re planning to conceive at any point, ensure your doctors are aware so that they can adjust your scleroderma management appropriately. 

Personalised Approaches: Each pregnancy is unique, and what works for one person may not work for another. Or, as seen in Bridget’s story, what may work for one pregnancy may not work for another! So try to keep an open mind and be flexible in all aspects of your pregnancy journey.

Expert Insights from Dr Laura Hummers


1. Scleroderma Overview:

Scleroderma, an autoimmune condition, varies greatly among individuals. It can be classified into different types based on skin involvement (limited vs. diffuse) and specific autoantibodies present. Understanding these variations is crucial as they influence scleroderma management and pregnancy outcomes. That being said, pregnancy with scleroderma is rare because of the age most women develop it (30 – 45 years old) is when fertility starts to naturally decrease to give way to menopause.

 For more in-depth information about Scleroderma, read this resource.

2. Pregnancy and Scleroderma:

   – Fertility: Generally, scleroderma does not majorly impact fertility. However, some medications, like cyclophosphamide, can cause premature menopause and infertility. As fertility naturally declines with age, this can be a consideration for older patients with scleroderma.

   – Contraception: Most contraceptive methods are safe for scleroderma patients, though oestrogen-based methods may be problematic for some people, such as those with a history of blood clots.

  – Miscarriage Rates: Miscarriage is common in the general population (8-20%) and slightly higher in women with scleroderma (around 15%). The risk varies, being higher in those with diffuse skin involvement compared to limited scleroderma.

  – Pregnancy Loss: Late pregnancy loss (after 20 weeks) is rare but can be associated with placental blood flow issues as a result of scleroderma. Regular check ups and open conversations with your health team can help reduce the risk of this. 

  – Preterm Birth and Small Babies for Gestational Age: Women with scleroderma are more likely to have preterm births and babies that are small for gestational age, particularly those with diffuse scleroderma. These are usually another result of Placental blood flow, but, as seen in Bridget’s first pregnancy, this doesn’t mean a baby will have long-term impacts.

  – Preeclampsia: Preeclampsia is a common pregnancy related blood flow problem (affecting 5% of pregnancies) involving high blood pressure and protein in urine in women who are 20 or more weeks pregnant. Its occurrence in scleroderma patients is debated due to similarities with scleroderma renal crisis. Treatment typically involves delivering the baby, which poses challenges if renal crisis is suspected. This condition is more common if you have a family history of preeclampsia or have a twin pregnancy.

 – Scleroderma Renal Crisis: This condition affects 5-10% of diffuse scleroderma patients and presents similarly to preeclampsia as it causes high blood pressure and decreases blood flow in the kidney. ACE inhibitors used for renal crisis are contraindicated in pregnancy, and usually patients with scleroderma kidney problems are advised against pregnancy.

 – Antiphospholipid Antibodies: These antibodies, though more commonly associated with lupus, can also be found in scleroderma patients. They increase the risk of blood clots and recurrent miscarriages. Special monitoring and potential use of aspirin or heparin can be considered during pregnancy.

  – Anti-Ro/SS-A Antibodies: Present in about 20% of scleroderma patients, these antibodies can cross the placenta and cause neonatal lupus, including heart block in the foetus. Monitoring with foetal cardiac echocardiograms is crucial, especially if a previous pregnancy involved similar complications.

  – Scleroderma and Kidney Disease: Patients with prior scleroderma-related kidney disease face challenges since ACE inhibitors, commonly used to manage renal crisis, are contraindicated during pregnancy. Close collaboration with the care team is essential to help prevent this.

  – Pregnancy in Dialysis Patients: Pregnant women on dialysis face increased risks due to the added strain on kidneys. Dialysis may reduce fertility, and pregnancy can complicate dialysis management. Generally, pregnancy is advised against for these patients, but consult with your doctors about whether to go forward with this decision.

  – Pregnancy with Lung Disease: Pregnant women with scleroderma-related lung disease may need supplemental oxygen due to increased oxygen demands. Significant pulmonary hypertension is usually considered a contraindication to pregnancy. Regular monitoring of lung function and oxygen levels is vital, as well as reduced high-oxygen activities, if possible.

  – Skin and Muscle Involvement: Skin stretching during pregnancy is typically not an issue, though very tight skin might be a concern. Muscle inflammation or myositis complicates pregnancy management due to contraindicated medications and potential impact on muscle strength.

  – Joint Involvement: Active joint inflammation or arthritis can increase pregnancy complications. Special considerations are needed for joint and muscle issues both during pregnancy and postpartum.

Preconception Planning:

   – Medical Assessment: A thorough evaluation by a rheumatologist is essential before attempting pregnancy. This includes assessing the extent of scleroderma, organ function, and reviewing current medications.

   – Collaborative Care: It’s vital to involve a high-risk obstetrician and to gather a supportive team, including family and counsellors, to navigate the physical and mental challenges of pregnancy with scleroderma.

  – Medications: Pregnancy-safe medications include calcium channel blockers and antacids, while many immune-suppressing drugs like methotrexate and cyclophosphamide are contraindicated. The safety of biologic drugs varies, and recommendations can differ by country. Listen to your doctors to ensure you’re taking the best medication for your individual needs.

Impact of Pregnancy on Scleroderma:

   – Scleroderma severity: Scleroderma typically does not significantly worsen or improve during pregnancy. Research indicates that about 60% of patients experience stable activity, 20% may see improvement, and 20% may experience worsening symptoms.

   – Pregnancy Effects: Common pregnancy symptoms such as acid reflux and shortness of breath may be exacerbated in individuals with scleroderma. Conversely, some symptoms like Raynaud’s phenomenon may improve due to increased blood volume.

Managing Scleroderma During Pregnancy:

   – Monitoring: Regular monitoring of scleroderma symptoms and pregnancy progress is crucial. Changes in lung function and heart health due to the growing baby and increased blood volume should be managed carefully.

   – Medication: Some medications used for scleroderma are contraindicated during pregnancy, so careful planning and consultation are necessary to adjust treatments.

  – Delivery Considerations: Delivery planning should include extra gloves, warming devices, and careful monitoring of blood pressure. IV access may be challenging, especially with skin involvement, and epidurals are generally referred over general anaesthesia when possible.

Pregnancy with scleroderma can be challenging, but with appropriate medical care and support, many people navigate it successfully. If you have specific questions or need personalised advice, consider reaching out to specialists who can provide tailored support for your individual situation.

For those living with Scleroderma, staying updated and informed can make a world of difference. Connecting with others can also be hugely beneficial. Find out more about support in your area here. 

If you’d like to gain firsthand knowledge, our National Education Sessions and Virtual Education Sessions are available to you at no charge. Our Virtual Education Sessions are held every month through Google Meet. You can sign up for these free Virtual Education Sessions here.

These sessions provide an opportunity to engage with medical professionals and seasoned legal experts who will address common inquiries about Scleroderma and related topics.