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How to Have a Successful Pregnancy with Lupus [2023 Update)

Updated Part MARCH 2023:

Ghalandari et al from the Netherlands reported their results of using Benlysta during pregnancy in the March edition of the journal Lupus.



Can lupus patients get pregnant and have a safe and successful pregnancy with lupus?

Absolutely, “yes!,” most lupus patients can safely get pregnant and have a healthy baby. In this blog post, I give you the tips and tricks for increasing your chances of a successful pregnancy.

However, it does take proper planning. Below is a succinct and practical checklist that all lupus patients can use to plan for a successful pregnancy with lupus. It is best to do this more than 6 months before trying to get pregnant. However, it is very useful at any point, even if you get pregnant accidentally without planning for it.

With the 2022 repeal of “Roe vs Wade,” having a safe pregnancy is even more important for lupus patients. To learn more about the impact of this repeal on lupus patients, read the informative article posted by Kelli Roseta of “More than Lupus.”

Pregnancy with Lupus - can lupus patients get pregnant

A practical checklist for having a successful pregnancy with lupus

This checklist comes from the submitted manuscript for “The Lupus Encyclopedia” edition 2. This is a shorter version, but includes the most important information. Note that all recommendations are in accordance with The Americal College of Rheumatology Reproductive Health Guidelines. I also thank Dr. Jill Buyon of New York Langone for helping with the manuscript and with this information. She is one of the world’s experts regarding lupus and pregnancy.

In addition to following this list, make sure to abide by the “Lupus Secrets” list of do’s and don’ts. If you have recently received a lupus diagnosis or are new to my website and suggestions, visit my page, where I talk about what newly diagnosed lupus patients should do. This combination of actions will ensure the best chances of having a safe and successful pregnancy with lupus.

The medical literature supports all the following recommendations. You can find the list of references listed under chapters 18 and 41 on the references page of this website. The medical literature is rich, answering “Can lupus patients get pregnant safely?” … the answer is “yes.”

NOTE: These recommendations are valid for most lupus patients. However, always double-check with your doctor before you put any of these into practice. Your medical situation may require different approaches.

Ensure your lupus is under excellent control for at least six months before pregnancy.

This is the most crucial initial step. Avoid an unplanned pregnancy if you have lupus. You should be using birth control measures. If you and your partner decide that you would like to have a baby, begin this discussion with your rheumatologist. Find out how you should prepare for pregnancy. One of the first things to determine is if your lupus has been under reasonable control for at least six months. If it has not, then that should be your first goal. After six months of reasonable lupus control, it is safer for lupus patients to get pregnant.

A study of 275 pregnancies showed that if a woman with SLE had active disease within three months of getting pregnant, she was four times more likely to lose her baby.

Make sure that your blood pressure is under good control.

In most people, this means making sure the top number (systolic blood pressure) remains less than 130 mmHg and that the bottom number (diastolic blood pressure) remains below 80 mmHg. You may need to frequently see your primary care physician (or cardiologist or nephrologist) for medication adjustments. Paying close attention to diet, weight loss, and exercise can also help. Staying away from foods high in sodium can help. Ensure that you have a home blood pressure machine. If your blood pressure is consistently higher than the recommended levels, see your doctor for medication adjustments. Also, make sure that your device is accurate. Take it with you to one of your doctor’s appointments and compare its results with your doctor’s machine results.

You should not take many blood pressure medicines during pregnancy. However, Hydrochlorothiazide (HCTZ), methyldopa, hydralazine, calcium channel blockers, and labetalol are safe during pregnancy.

Ensure you take your anti-malarial medication (like hydroxychloroquine) regularly.

Whatever you do, do not stop taking your hydroxychloroquine (Plaquenil). One of the worst things to occur during pregnancy is lupus flares. Hydroxychloroquine helps to prevent lupus flares during pregnancy.

Taking hydroxychloroquine (HCQ) also decreases the possibility of miscarriages. Hydroxychloroquine can even help reduce antiphospholipid antibody levels. HCQ can also lower the chances of having a baby with neonatal lupus if you are anti-SSA positive.

HCQ does not cause any problems with the baby. Instead, HCQ increases the survival chances of your baby.

If you are taking a medication that should not be taken during pregnancy, ask for a pregnancy-safe drug before attempting pregnancy.

Lupus patients should stop some treatments before getting pregnant. While waiting, use effective, safe birth control measures. IUDs are one of the best choices.

Medications that should be stopped followed by a waiting period before getting pregnant include mycophenolate (6 weeks), cyclophosphamide (3 months), methotrexate (1 month), thalidomide (1 month), and bisphosphonates such as alendronate (6 months). Janus kinase inhibitors (tofacitinib, upadacitinib, baricitinib) safety are unknown and should be stopped before pregnancy.

If you get pregnant while taking unsafe drugs, stop the medication immediately and contact your doctors.

Leflunomide stays in the body for a long time. It is vital to do an elimination protocol using cholestyramine or charcoal to remove the leflunomide from your body before pregnancy. It is also essential to have two negative blood level results for leflunomide before pregnancy.

Your doctor usually needs to replace an immunosuppressant medicine that is stopped with one that can be safely used during pregnancy. Azathioprine and Benlysta are good options. Since it can take up to three months for azathioprine to work, it is best to make this drug substitution at least 3 months before pregnancy. How long this should be done for Benlysta is not certain.

Study Shows that Benlysta Reduces Flares During Pregnancy

Benlysta was shown to be safe and effective during pregnancy in a March 2023 study and after an evaluation of the Benlysta Pregnancy Registry.

  • Women who took Benlysta during pregnancy numerically had similar live birth rates compared to women who stopped their Benlysta.
  • No lupus flares occurred in the women who took Benlysta, while four women who stopped Benlysta had lupus flares during pregnancy.
  • The Benlysta Pregnancy Registry, ongoing since 2011, has not shown any increase in or patterns of congenital malformations. The registry was handed off to OTIS in 2023 to combine with more data… we eagerly await their evaluation.

Many, to most, rheumatologists stop Benlysta before pregnancy. This opinion is based upon the science and has not been formally accepted into the American College of Rheumatology’s Reproductive Guidelines from 2022.

However, I’d be surprised if it is not added when the Guidelines are updated in the future (I have formally recommended it be changed… ie include Benlsyta in pregnancy-safe drugs until middle of the 2nd trimester).

At this time, many rheumatologists will stop Benlysta for pregnancy (going strictly by the ACR guidelines), while others of us (like me) will discuss it with the patient and weigh the pros and cons of continuing it or stopping it, and let them make an informed decision. Benlysta is a large molecule and does not start to cross the placenta until about mid-2nd trimester. So, I personally will continue it until the middle of the 2nd trimester in those who continue it. I have had very good success with this approach (just like the Netherlands doctors).

Special instructions about nonsteroidal anti-inflammatory drugs (NSAIDs).

It is common to use an NSAID (such as ibuprofen or naproxen) to help decrease the inflammation and pain of lupus arthritis or pleurisy when lupus patients become pregnant. However, it is preferable to use acetaminophen if it helps. It is crucial to stop NSAIDs after about 30 weeks. If they are not stopped, there is the potential that a blood vessel (the ductus arteriosus) could close prematurely, resulting in problems with the baby’s lung circulation.

NSAIDs may decrease some women’s chances of getting pregnant (conceiving). If you are trying to conceive and are unsuccessful, consider stopping NSAIDs if you are taking one.

 In October 2020, the FDA recognized that NSAIDs could cause kidney problems in the fetus or oligohydramnios (too little fluid in the womb) around 20 weeks of pregnancy. If NSAIDs are required at 20 weeks and later, it is recommended to use the lowest dose possible for the shortest amount of time.

Take low-dose aspirin throughout pregnancy to help have a successful lupus pregnancy.

Taking low-dose aspirin (81 mg to 162 mg daily) lowers the risk of a complication called preeclampsia. You should begin aspirin while attempting pregnancy if you are not at high risk for bleeding. Previously, it was recommended to stop aspirin in the last trimester. However, obstetricians now advise continuing aspirin throughout delivery. The benefits it provides in the last trimester are higher than the chances of increased bleeding at delivery time. If a Cesarean section is planned, it should be stopped 10 – 14 days before surgery.

Make sure you have your proper vaccinations.

Hopefully, you have had your appropriate vaccinations: COVID-19, pneumococcal, the flu shot yearly in the fall, and all recommended vaccines, including a tetanus vaccine. These need to be done to protect you and your baby. Also, consider getting Evusheld.

Do not take any medications during pregnancy unless your rheumatologist and obstetrician approve.

Your rheumatologist can usually address your SLE drugs. However,  you need to check with your obstetrician about other medicines. This should be planned before you get pregnant.

Do not smoke.

There are many reasons people with lupus should not smoke. It is even more critical when lupus patients get pregnant because you endanger your unborn baby’s life. Smoking during pregnancy increases the risk of preeclampsia, death of the baby, congenital malformations, preterm delivery, and a baby born smaller than normal. The unhealthy effects of smoking during pregnancy continue after delivery. Babies born to mothers who smoke are at increased risk for sudden infant death syndrome, lung and ear infections, asthma, colic, shorter height, obesity, hyperactivity, short attention spans, and decreased school performance with lower reading and spelling abilities. Even secondhand smoke has been associated with an increased risk of stillbirth (death of the baby), congenital malformations, and having a baby born smaller than normal.

Do not drink alcohol.

Drinking alcohol during pregnancy increases the chances of stillbirth and congenital malformations related to fetal alcohol syndrome. There is no safe alcohol amount during pregnancy.

Exercise regularly during pregnancy unless told otherwise.

Regular exercise is important during pregnancy because it decreases the chances of complications, including diabetes and preeclampsia. However, some medical conditions may require physical activity restrictions for pregnant women. Ask your obstetrician.

Eat a diet that is healthy for lupus and for pregnancy.

Remember that you are eating for two during pregnancy. However, this does not mean that you should be overeating. Consider seeing a dietician during pregnancy to learn what foods (and amounts of food) are best. You need to take extra precautions to decrease food-bourne illnesses (such as hepatitis A, listeria, toxoplasmosis, or brucellosis). Suppose you eat a healthy diet full of whole grains, vegetables, fruit, and an adequate amount of protein and dairy products. You may not need to take any vitamin supplements, except for folic acid, as discussed below.

Take supplements as directed by your obstetrician.

Unfortunately, most Americans do not eat a healthy diet, and most women need to take extra vitamins and minerals during pregnancy. Discuss with your obstetrician, dietician, and rheumatologist.

Suppose you are at increased risk of osteoporosis. In that case, you may need to take calcium and vitamin D supplements. The calcium recommendation is 1,000 mg a day during pregnancy to allow for the developing baby’s skeleton’s increased calcium requirements.

Most SLE women are vitamin D deficient and should take vitamin D to help the lupus immune system. Speak with your obstetrician or rheumatologist about the amount of vitamin D you should take.

All pregnant women should take a supplement that contains at least 0.4 mg of folic acid daily one month before conception and continue it for several months. This helps prevent spina bifida (a problem with the baby’s spinal cord).

See a high-risk obstetrician experienced with lupus pregnancy.

All SLE pregnancies are potentially high-risk. We recommend that all lupus patients see a high-risk obstetrician (maternal-fetal medicine specialist) before pregnancy. Try to see someone experienced in caring for pregnant lupus patients.

If you have any major organ involvement from lupus, see that specialist while pregnant.

This is especially true for certain heart disease complications, lung disease, kidney disease, or central nervous system involvement. Suppose you have had lupus nephritis before, but it is in remission when you get pregnant. In that case, you do not have to see a kidney doctor (nephrologist) if your urinary protein and blood eGFR are normal. However, be sure your rheumatologist feels comfortable monitoring your kidneys.

If confirmed by cardiac catheterization, pulmonary hypertension is such a high risk for poor pregnancy outcomes that many experts recommend that all women who have it should not get pregnant. However, a successful pregnancy is possible in some situations.

Follow up with your rheumatologist regularly during pregnancy.

If lupus is under good control at conception, see your rheumatologist at least once each trimester during pregnancy. They will check labs for SLE disease activity, anti-dsDNA, and complements during these visits. You may need to be seen more often if you develop active lupus signs such as a skin rash, joint pain, pleurisy, difficulty breathing, extreme fatigue, ankle or eye swelling, and fever. If you have a history of past kidney disease you may need more frequent monitoring. Generally your obstetrician will check your urine every time you visit. You should immediately communicate any increases in urine protein to your rheumatologist. Early intervention for lupus flares can significantly increase the chances of a successful outcome.

If you are positive for anti-SSA, have your baby’s heart monitored.

SSA antibody can cause a heart problem called congenital heart block (CHB), where the baby’s heart beats too slowly.

The 2020 American College of Rheumatology (ACR) guidelines recommend that anti-SSA-positive women have their baby’s heart monitored using pulsed Doppler fetal echocardiography (fetal heart monitoring, usually by a pediatric cardiologist) safely uses sound waves to assess the heart. This should begin around the 16th to 18th week of pregnancy through the 26th week. If you have had a baby in the past with CHB, you should have fetal heart testing weekly. If you have not, less often may be OK.

You can now monitor your own baby’s heart with a handheld Doppler monitor at home. These cost about US$80 in 2022. A study showed that mothers can identify abnormal rates and rhythms, and more studies are underway to further evaluate their use.

If you are positive for antiphospholipid antibodies, ask your rheumatologist if you should take blood thinners during and after pregnancy.

Antiphospholipid antibodies (especially the lupus anticoagulant) increase the risk of blood clots in the placenta (the connection between the mom and baby). The antiphospholipid antibodies include lupus anticoagulants, cardiolipin antibodies, and beta-2 glycoprotein I antibodies. This increases the risk of miscarriage, stillbirth, preeclampsia, and other complications. Unless at high risk for bleeding, all women with SLE should take low-dose aspirin, around 81 mg daily, throughout pregnancy. This may help lower the risk of preeclampsia. Taking hydroxychloroquine (Plaquenil) also reduces these complications.

However, if you have had several early miscarriages in the past (3 or more), have had a late pregnancy loss or stillbirth, or have ever had a blood clot of any kind, then you may have antiphospholipid syndrome (APS). Women with APS should probably also be taking a stronger blood thinner, such as low molecular weight heparin (LMWH, like enoxaparin, Lovenox) during pregnancy. If you take heparin during pregnancy, take calcium and vitamin D, and perform regular weight-bearing exercises to prevent broken bones from heparin-induced osteoporosis.

There is an increased risk of getting blood clots during the first 6 to 12 weeks after delivery, especially in women with APS. To prevent these, the ACR guideline for reproductive health management recommends that all women with APS (including those who have never had a blood clot) continue blood thinners (such as heparin or warfarin) 6 to 12 weeks after delivery. Women with APS who have had blood clots should continue taking a blood thinner.

Suppose you have APS and are taking warfarin (Coumadin) before pregnancy. You must switch this to LMWH before pregnancy. Examples of LMWH include enoxaparin (Lovenox), dalteparin (Fragmin), and tinzaparin (Innohep). Warfarin can cause congenital birth defects during the 1st trimester. The optimal timing is to make this switch before attempting pregnancy. Lupus patients who get pregnant on warfarin, it is essential to contact your doctors immediately.

If you are on thyroid medications, ensure your TSH blood test is normal.

There is an increased risk of preterm delivery in women with uncontrolled autoimmune thyroid disease. However, normalizing the TSH level with medications lowers this risk. Your thyroid status should be monitored and treated closely during pregnancy.

Thyroid function test interpretation during pregnancy can be complicated. It is best for an endocrinologist (thyroid specialist) to monitor them during pregnancy.

However, treating subclinical hypothyroidism or those with positive thyroid autoantibodies (like anti-TPO) without significant thyroid level abnormalities does not reduce pregnancy complications. You should not take thyroid supplements in these situations.

If you have been on steroids during pregnancy, alert your obstetrician as you may need “stress doses” of steroids if you need a C-section.

Delivery by Cesarean delivery (also called C-section or Cesarean section) is a stressful event. Naturally, the adrenal glands secrete a large amount of steroids during the event to help the body manage stress. However, people who have taken steroids in high enough doses or for a long time are at increased risk of the adrenal glands not working correctly and not providing these increased amounts. This condition is called adrenal insufficiency. Women with adrenal insufficiency may need additional doses of steroids at C-section surgery to compensate for this. Alert your OB/GYN and high-risk obstetrician to ensure that the appropriate increase in steroids is given at delivery. Note that stress doses of steroids are not needed for vaginal delivery.

Wear a medical alert bracelet stating that you may have adrenal insufficiency or have been on chronic steroids. If you were to go into labor prematurely in an area where the doctors do not know you, they need to recognize that you need the steroids.

Previous studies suggested that lupus flares were more frequent after delivery. Giving steroids to the mother after delivery was commonplace to prevent them. The PROMISSE Study in 2020 showed that using modern pregnancy care methods, like hydroxychloroquine in all patients, severe flares occur less than 2% of the time after delivery. Therefore, it is no longer recommended to use prophylactic steroids after surgery.

Drugs safe during breastfeeding (and unsafe):

Go to HOP STEP to learn more

Safe drugs during breastfeeding:

Possibly safe during breastfeeding:

Belimumab and rituximab

Do not take during breastfeeding:

Cyclophosphamide, methotrexate, mycophenolate


Great, easy-to-follow advice from HOP STEP at lupuspregnancy.org


Use this easy to use checklist on what to do for pregnancy in lupus by HOP STEP: Reproduced with permission from HOP STEP
Use this Checklist for birth control when you have lupus and other autoimmune disorders: Reproduced with permission from HOP STEP

Thank you to HOP STEP and lupuspregnancy.org for allowing me to reproduce the above

HOP STEP stands for: Healthy Outcomes in Pregnancy with SLE Through Education of Providers

Brought to you by:

The Duke Autoimmunity in Pregnancy Clinic

with a grant from GlaxoSmithKline


Also, check out Duke University’s Repro Rheum

Repro Rheum is brought to you by the rheumatology pregnancy experts like Dr. Megan E. B. Clowse, MD, MPH

https://reprorheum.duke.edu/


Any questions about pregnancy, birth control, breastfeeding?

Go to lupuspregnancy.org or email hop-step@duke.edu

Author:

Donald Thomas, MD, author of The Lupus Encyclopedia

Disclosure: Dr. Thomas is on the Speaker’s Bureaus of GSK, AstraZeneca, Aurinia, and Exagen


 

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