If you have lupus, managing pregnancy while managing chronic illness takes a team effort – you don’t have to go it alone. This article will address many of the questions you may have about lupus and pregnancy in order to have informed discussions with your healthcare practitioners about what to expect if you are planning to become a mom.

 

Introduction

No mother can deny that having a baby can be life changing in ways they may never have anticipated. Emotions can go back and forth from elation and excitement to worry and even fear as the reality of being responsible for keeping a tiny being safe, happy and well cared for settles in.  All the advice in the world cannot fully prepare us for bringing a child into the world. It is something magical that needs to be experienced first-hand in order to fully appreciate, and it’s as individual as our children themselves.

 

How do I prepare for pregnancy when I have lupus?

Anyone who is considering becoming a parent should plan for it the best they can. This will help to ensure a healthy and safe pregnancy and delivery, taking both the mom’s and baby’s health into the utmost consideration. When you have lupus, planning becomes even more important as you may have overlap diseases that may present complications, medications that may need to be managed differently than you are used to, and other unknown risks that may arise.

Set up Your Team

Researchers Caroline Knight and Catherine Nelson-Piercy suggest pregnancy counseling as an important way to plan for having a baby, and it should extend from prenatal to postnatal care. Knight and Nelson-Piercy go on to explain the importance of involving your healthcare team in your pregnancy plan and throughout your pregnancy using a “multidisciplinary approach,” which should include your rheumatologist, general practitioner, any other specialists you may regularly see, and of course your obstetrician.  So, get your team together early on!

Assess Your Risks

After you have initially discussed your desire to become pregnant with your healthcare practitioners, they should conduct a risk assessment of your current health status.  Knight and Nelson-Piercy suggest that a thorough and responsible risk assessment should include checking into the following:

• Your lupus disease activity: Are you in the midst of a lupus flare, or have you had one in the last six months?  Women who have had low disease activity and who have not recently experienced a flare have less of a chance of experiencing a flare during pregnancy.
• Your medication history: Your healthcare practitioner may suggest tapering down on medications that are contraindicated during pregnancy and/or adding specific medications to your treatment plan and regime in preparation of pregnancy.  We will discuss this later in this article.
• Pre-existing organ damage: Do you have involvement with organ damage such as lung, digestion, cardiovascular or renal system damage.  Active lupus nephritis, for example, can not only affect fertility, but can also contribute to a difficult pregnancy for both mom and baby.  Being pregnant while having lupus nephritis may increase your risk of having a lupus flare by 30-60% according to Knight and Nelson-Piercy. In a 2016 article published in the Journal of Autoimmunity, researchers recommend that involving your healthcare team in the management of your pregnancy – especially with the presence of lupus nephritis – is optimal to minimizing the health risks to you and your baby.
• Your most recent serological profile: This includes looking for the presence of anti-dsDNA, anti-RoLa antibodies and antiphospholipid antibodies (antiphospholipid syndrome or APS). The European League Against Rheumatism (EULAR) recommends that individuals with APS use contraception and thoroughly discuss family planning with their healthcare professional and only proceed with trying to conceive when your health stabilizes.

Contraception

Your healthcare practitioner may suggest using contraception until you are fully physically and emotionally ready for pregnancy. Effective and safe methods of contraception for individuals with lupus include:

• Barrier methods such as condoms, diaphragms, sponges and caps. Knight and Nelson-Piercy suggest that while these methods are convenient, they can come with a 32% failure rate.
• Hormonal contraception, which includes the pill, patches, rings, implants and the Mirena intrauterine system (IUS). While these are extremely effective methods of contraception, there are contraindications if you have aPL, APS, active SLE, hypertension, lupus nephritis and other conditions as hormonal therapy may increase your risk of developing a venous thromboembolism (VTE).
• Copper-containing coil intrauterine contraceptive devices do not post a VTE risk because they do not contain hormones, but because they may increase menstrual bleeding they are not recommended if you take blood-thinning medications such as Warfarin.

According to Knight and Nelson-Piercy, “30%-50% of pregnancies are unplanned.” If you unexpectedly find yourself pregnant, see your healthcare practitioner immediately in order to receive appropriate pregnancy counseling, and adequately monitor your health and the health of your baby.

What if I want to have a baby, but have difficulties conceiving?

Wanting a baby does not always mean it is easy to conceive – even the healthiest of women can find it difficult to become pregnant. The European League Against Rheumatism indicates the following conditions that may make it difficult to conceive:

• Renal disorders such as lupus nephritis.
• Immunosuppressive drug therapy.
• The use of cyclophosphamides (CYC).

Your healthcare practitioner may recommend that you delay pregnancy and use contraception until your current health status changes or alterations in medication treatment plans have taken affect. When your health improves, but you still find it difficult to conceive, your healthcare team may discuss ways to increase fertilization and the chance of conception. These methods may include:

• Ovulation induction therapy.
• In vitro fertilization (IVF).

Both of these methods have an efficacy rate comparable to the general population making them viable options to increase your ability to become pregnant.

It is important to remember, however, that being a parent does not have to mean conceiving a child.  You can be a loving parent through adoption and foster parenting.  So, if you continue to have difficulties conceiving, or if you and your healthcare team determine that pregnancy is not a healthy option for you, ask them to refer you for counseling to discuss alternative ways to become a parent.

 

What will care look like if I become pregnant?

Knight and Nelson-Piercy stress the importance of having a healthcare team monitor your health throughout your pregnancy. Depending on your health status and risk assessment, this team may include your “rheumatologist…obstetrician, nephrologist, fetal cardiologist, fetal medicine specialist, neonatologist, and/or specialist midwife.” Ideally, you should start working with this team as soon as you conceive.

Within your first trimester, you should be seen by your rheumatologist and obstetrician to assess your health risks. How healthy you are will determine how often and which specialist you see. Generally speaking, Knight and Nelson-Piercy suggest that you be seen “every 4 weeks from 16 to 28, weeks, every 2 weeks from 28-34 weeks, and every week from 34 weeks.”  If you have high disease activity, you will also most likely have blood tests taken 4-8 weeks or more often in the presence of flares or other complications.  Again, your treatment plan will be tailored to you be based on your individual health needs and the needs of your baby.  However, at a minimum, this is how often you can plan to see members of your healthcare team.

In order to assess your baby’s growth and health, ultrasound imaging, Doppler measurements and amniotic fluid assessment will be done late in your second trimester and in mid-third trimester. If any abnormalities are found, Doppler assessments may need to be done every 2-4 weeks and fluid testing every week. Your healthcare team will do all they can safely to monitor your baby’s well being.

Can I stay on my medications while I’m pregnant?

In their 2016 article for the European Journal of Internal Medicine, researchers Gabriella Moroni and Claudio Ponticelli discuss some of the most commonly prescribed medications for lupus and overlap diseases and whether or not they are safe to take prior to and during pregnancy:

• Immunosuppression Therapy: While it has not been confirmed as to whether or not glucocorticoids in early pregnancy cause birth defects such as oral cleft in babies, maintenance doses of prednisone (5-10mg per day) is usually considered safe.
• Cyclophosphamide: It is advised not to use cyclophosphamides in the first trimester of pregnancy as they can pose a risk for miscarriage and pre-term delivery. They may be prescribed, however, in the second or third trimester in the presence of a severe lupus flare.
• Azathioprine: Azathioprine is generally considered safe to take during pregnancy, however, chromosomal aberrations cannot be completely ruled out.
• Cyclosporine: Your healthcare practitioner may increase your dosage by up to 25% during pregnancy, as the blood levels of this medication tend to decrease when you are pregnant. While there doesn’t seem to be an increased risk for birth defects, it can’t be completely ruled out.
• Methotrexate: Methotrexate is contraindicated in pregnancy, and therefore your healthcare practitioner will stop treatment before you try to conceive.
• Monoclonal antibodies: While considered relatively safe in the first trimester, Rituximab is not considered safe in the second and third trimesters of pregnancy. Belimumab may or may not be safe though there is no definitive link between the drug and the development of birth defects. Be sure to talk with your healthcare practitioner for more information.
• Hydroxychloroquine: Hydroxychloroquine may actually be recommended during pregnancy in order to prevent flares and keep disease activity low and is considered relatively safe.

You may be asked by your healthcare practitioner to start a daily aspirin regime before you conceive and during pregnancy especially if you have kidney disease. Moroni and Ponticelli explain that taking aspirin “reduces the risk of preeclampsia…increases birth weight” and along with heparin is the “favored treatment of APS.”

Your healthcare team should discuss all the related risks associated with the continuation of any of your medications during pregnancy and will adjust your treatment plan accordingly. Never hesitate to express your fears and concerns about continuing (or discontinuing) your medications with your healthcare team including a trusted pharmacist. When you’ve come to depend on your medications to stabilize your health, making changes can understandably cause a lot of anxiety.

 

Will my health ever be at risk? Will my baby’s?

It is imperative to keep the lines of communication open with your healthcare team and to keep your scheduled office visits throughout your pregnancy. This will help you and your team take control of your health and in turn the health of your baby. Keeping engaged and remaining proactive in your own medical treatment throughout your pregnancy will also alert you and your practitioners of any changes to your health in order to alter treatment plans so you can feel your best, protecting the health of you and your baby.

My Health

As an individual with lupus, even if you are at optimal health when you conceive, you are more susceptible to developing complications during pregnancy. In a 2017 article in the journal Best Practice & Research Clinical Rheumatology, Rebecca Fischer-Betz and Christof Specker note the following pregnancy complications that may occur when you have lupus if your health is not closely monitored:

• Thrombosis or blood clots (often due to APS).
• Post-partum infection.
• Thrombocytopenia – low blood platelet count, which can stop your blood from clotting.
• Lupus nephritis.
• Preeclampsia – high blood pressure and organ damage, especially in the kidneys and liver.
• HELLP – a severe form of preeclampsia – hemolysis elevated liver enzymes and low platelet count.
• Pulmonary embolism.
• Lupus flares.
• Cardiomyopathy – disease of the heart muscle that restricts the pumping of blood.

In a 2017 meta-analysis published in the Journal of Autoimmunity, researchers noted that the incidence of childbirth by Cesarean section was significantly higher in pregnant women with SLE than non-SLE pregnant women. Your healthcare team will help make sure you remain as healthy as you can throughout your pregnancy in order to minimize these risks and increase your chances of a vaginal birth. Should you develop any of the conditions mentioned above, they will work closely with you to ensure a safe and healthy delivery.

My Baby’s Health

Low birthrate and placental insufficiency are two of the more common health risks that may affect your baby. EULAR recommends fetal monitoring, especially during the third trimester of pregnancy to track the progress of your baby’s development. Monitoring may include:

• Doppler Ultrasound – these images track the flow of blood throughout the body.
• Ultrasonography – ultrasounds are images that focus on tissue and organs.
• Fetal Biometry – part of an ultrasound, healthcare practitioners can take a close look at your baby to determine its development, size, etc.

According to the 2017 Journal of Autoimmunity meta-analysis, babies born to mothers with SLE also have an increased risk of being born prematurely which may require neonatal intensive care. If you experience a lupus flare, this also can increase your chance of delivering a baby with low birth rate and prematurely as compared to pregnant women with low-disease activity. Closely monitoring your baby will enable healthcare practitioners to proactively and preemptively increase the chances of your baby being born happy, healthy and full-term.

 

Self-Advocacy and Pregnancy

You’re thinking for two (or possibly more) now! Be sure to ask as many questions as you may have – you want to be able to make informed decisions and fully understand why changes may be made in your treatment plan, what’s happening to your body and how your health may affect your baby’s. Write things down as you think of them and bring them with you to your visits – ask your healthcare team what’s the best way to keep in communication between visits. If you find self-advocacy difficult, bring a trusted ally with you to ask the tough questions or even take notes. There’s never such thing as having too much information where health is concerned, especially when you have lupus and are having a baby.

 

In Conclusion

The best thing you can do to have the healthiest and safest pregnancy possible for you and your baby is to follow the instructions of your healthcare team. Taking their advice to take care of yourself first will in turn take care of your child.  Motherhood should be taken seriously from the moment you consider becoming a parent. Ask questions of your healthcare team when you have concerns and make sure to be your own best advocate. Whether you choose to conceive, adopt or foster children, your priority should be to stay on top of your health and your lupus in order to make sure you can fully enjoy all the happiness and blessings being a parent can bring.

References

Andreoli, I., Bertsias, G., Agmon-Levin, N., Brown, S., Cervera, R., Costedoat-Chalumeau, N., …Tincani, A. (2016). EULAR recommendations for women’s health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and antiphospholipid syndrome. Annals of Rheumatic Diseases. Retrieved from: https://ard.bmj.com/content/76/3/476

Bundhun, P., Soogun, M., & Huang, F. (2017). Impact of systemic lupus erythematosus on maternal and fetal outcomes following pregnancy: A meta-analysis of studies published between years 2001-2016. Journal of Autoimmunity, 79, 17-27. http://dx.doi.org/10.1016/j.jaut.2017.02.009

Fischer-Betz, R., & Specker, C. (2017). Pregnancy in systemic lupus erythematosus and antiphospholipid syndrome. Best Practice & Research Clinical Rheumatology, 31, 397-414. http://doi.org/10.2016/j.berh.2017.09.011

Knight, C., & Nelson-Piercy, C. (2017). Management of systemic lupus erythematosus during pregnancy: Challenges and solutions. Open Access Rheumatology: Research and Reviews. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354538/pdf/oarrr-9-037.pdf

Moroni, G., & Ponticelli, C. (2016). Pregnancy in women with systemic lupus erythematosus (SLE). European Journal of Internal Medicine. Retrieved from: https://www.researchgate.net/profile/Claudio_Ponticelli/publication/301773914_Pregnancy_in_women_with_systemic_lupus_erythematosus_SLE/links/5aacd537a6fdcc1bc0b949c4/Pregnancy-in-women-with-systemic-lupus-erythematosus-SLE.pdf

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.