“I have Lupus, am I able to have children?”, “Is it risky?”, “What about breastfeeding?”. These are some of the most common questions that people who have Lupus and want to get pregnant have. There are a lot of misconceptions that Lupus prevents people from getting pregnant and there is not enough information given to those who are interested and the results of that are showing very clearly on the studies that have been done. This article is here to try and help you understand what Lupus is and how it affects pregnancy and take away the fear surrounding this topic.
[This article is for educational purposes only. Always talk with your doctor or midwife beforehand and do not use these information without their consent.]
Disclaimer: Midwifery is a very inclusive and safe space for everyone, where your identity and your needs are valid and important to us. Thus, the terms used in this article aim towards making everyone feel comfortable and included.
Uterus owner (person with a uterus, uterus having person) <--> Woman
Parent <--> father (dad), mother (mom)
Birthing person <--> mother (mom)
Pregnant (pregnant person) <--> mother (mom)
Breastfeeding (Breast) <--> Chestfeeding (Chest)
[if you feel that you are not included at any point, please contact us and help us change that]
© NIKOLETA CHATZIPANAGIOTIDOU, SOME RIGHTS RESERVED 01/12/2020
What is Lupus?
Lupus is a chronic (lifelong) systemic autoimmune disease that occurs when your body's immune system (defense system) attacks your own tissues and organs because it cannot tell the difference between viruses, bacteria, and other germs and the body’s healthy cells, tissues, or organs. There are several different types of lupus:
Systemic lupus erythematosus (SLE) is the most common and most serious type of lupus. SLE affects all parts of the body.
Cutaneous lupus erythematosus, which affects only the skin
Drug-induced lupus, a short-term type of lupus caused by certain medicines
Neonatal lupus, a rare type of lupus that affects newborn babies
Anyone can get lupus. It is difficult to determine how many people have lupus, because the symptoms are different for every person. For example, it is estimated that 1.5 million Americans have lupus. Other estimates range from 161,000 to 322,000 Americans with systemic lupus erythematosus (SLE). About 9 out of 10 diagnoses of lupus are in women 15 to 44 years old.
Symptoms and Diagnoses
Inflammation caused by lupus can affect many different body systems, but usually it affects your joints, skin, kidneys, blood cells, brain, heart and lungs. It is not contagious and its causes are not fully understood yet. Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. Possible causes include: viral infection, certain medicine, sunlight, puberty, childbirth & menopause
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. People with SLE may experience a variety of symptoms that include fatigue, skin rashes, fevers, and pain or swelling in the joints. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.
Other symptoms can include sun sensitivity, oral ulcers, arthritis, lung problems, heart problems, kidney problems, seizures, psychosis, and blood cell and immunological abnormalities.
For the diagnose to be made the GP (General Practitioner) will usually do some blood tests. High levels of a type of antibody, combined with typical symptoms, means lupus is likely. You might be referred for X-rays and scans of your heart, kidney and other organs if the doctor thinks they might be affected.
Once lupus is diagnosed, you'll be advised to have regular checks and tests, such as regular blood tests to check for anaemia and urine tests to check for kidney problems.
Symptoms can flare up and settle down. Lupus often flares up (relapses) and symptoms become worse for a few weeks, sometimes longer. Symptoms then settle down (remission). The reason why this happens is not known.
Among some adults, having a period of SLE symptoms—flares—may happen every so often, sometimes even years apart, and go away at other times—remission. However, other adults may experience SLE flares more frequently throughout their life. Some people do not notice any difference and their symptoms are constant.
SLE can limit a person’s physical, mental, and social functioning. These limitations experienced by people with SLE can impact their quality of life, especially if they experience fatigue. Fatigue is the most common symptom negatively affecting the quality of life of people with SLE.
Many studies use employment as a measure to determine the quality of life of people with SLE, as employment is central to a person’s life. Some studies have shown that the longer a person has had SLE, the less likely they are to be a part of the workforce. On average, only 46% of people with SLE of working age report being employed.
Treatment of Lupus
(Caution: you should always talk with your doctor before using ANY medication)
While there's no cure for lupus, treatments can help control symptoms. Lupus is generally treated using:
anti-inflammatory medicines like ibuprofen,
antimalarial drugs: Medicines that prevent or treat malaria also treat joint pain, skin rashes, fatigue, and lung inflammation. Two common antimalarial medicines are hydroxychloroquine (Plaquenil) and chloroquine phosphate (Aralen). Studies found that taking antimalarial medicine can stop lupus flares and may help people with lupus live longer.
steroid tablets, injections and creams for kidney inflammation and rashes
Two medicine, rituximab and belimumab, are sometimes used to treat severe lupus. These work on the immune system to reduce the number of antibodies in the blood.
Adherence to treatment regimens is often a problem, especially among young women of childbearing age (15 to 44 years). Because SLE treatment may require the use of strong immunosuppressive medications that can have serious side effects, people with a uterus must stop taking the medication before and during pregnancy to protect unborn children from harm.
Pregnancy and Lupus
After many years of research and with the extraordinary evolution of technology and medicine, having lupus does not mean that you can’t enjoy the miracle of creating a life. Being pregnant with lupus is perfectly possible. Your chances for a successful pregnancy are excellent if you plan properly—when lupus symptoms are in remission—and your rheumatologist and specialists in maternal-fetal medicine monitor you closely.
Although many lupus pregnancies will have no complications, all lupus pregnancies are considered “high risk”. This means that problems during pregnancy may be more likely for women with lupus. It doesn’t mean there will definitely be problems. Your pregnancy should be managed by a perinatologist or maternal-fetal specialist (an obstetrician experienced in high-risk pregnancies) and your regular rheumatologist, or a rheumatologist who specializes in pregnancy and autoimmune conditions.
The best time to be pregnant is when you are doing well with your health. Uterus owners whose lupus is in remission have much less trouble with pregnancy than those whose disease is active. It is strongly recommended that you meet with your doctor three to six months in advance of when you plan to try to become pregnant. Your disease should be under control or in remission for six months before you get pregnant. Getting pregnant when your lupus is active could result in miscarriage, stillbirth, or other serious health problems for you or your baby.
These are the necessary laboratory tests your doctor will request once you are pregnant:
· Urinalysis – to check for protein in the urine
· Complete blood count
· Blood chemistry tests – to look at kidney and liver function
· Antiphospholipid antibodies – to check for risk of miscarriage
· Anti-SSA/Ro and Anti-SSB/La antibodies – to see if the fetus has a risk of heart block (neonatal lupus), in which case the doctor will request a fetal echocardiogram starting at 18 weeks
· Anti-DNA antibodies
· Complement levels
You will need to do your part as well.
· See your rheumatologist at least once every trimester—more often if you have a lupus flare. If you have a flare, you may need to be treated with prednisone, which does not cross the placenta except at high doses.
· See your perinatologist and obstetrician regularly and frequently, and follow their instructions about rest, exercise, diet, and medications.
· Pay very close attention to what your body is telling you and tell your doctors about anything that doesn’t seem right.
· Make the right lifestyle choices: Don’t smoke, drink alcohol, or take recreational drugs, and limit caffeine.
Treatment Changes
At your first visit, which should be around 6 months before getting pregnant, your doctor will probably recommend that you stop taking certain medications, including blood pressure medications, CellCept® (mycophenolate mofetil; MMF), cyclophosphamide, and methotrexate, leflunomide, and warfarin. Some drugs need to be stopped months before you try to become pregnant.
As it has been found in a study done by the Johns Hopkins Lupus Center, Prednisone is largely metabolized by the placenta, and is unlikely to cause any fetal malformations, but will increase the risk of the mother developing diabetes and hypertension. Some immunosuppressives, such as Imuran (azathioprine) have been continued during lupus pregnancy when necessary to control maternal lupus. Cyclophosphamide should never be used during pregnancy because of the high risk of important birth defects. Because of potential teratogenicity, Coumadin should be switched to heparin as soon as the person knows they are pregnant. ACE-inhibitors, because of effects on fetal kidney development, should be stopped as soon as they know they are pregnant. NSAIDs are usually allowed during the first trimester only, because of potential adverse effects on the fetal ductus arteriosus. Plaquenil (hydroxychloroquine) has a good safety record in lupus pregnancy, and is usually continued if needed to control maternal lupus as it helps prevent a lupus flare. It is rare that Plaquenil causes fetal problems, and the risk of a flare outweighs the fetal risk.
Risk factors
Certain factors can put you at higher risk for lupus flares and poor fetal outcome during your pregnancy:
· Pre-existing or present hypertension
· History or presence of kidney disease
· History of previous preeclampsia
· History of low platelets
· History of blood clots
· History or presence of antiphospholipid antibodies
Complications from lupus
Lupus can affect pregnancy at any stage. The flares happen most often in the first or second trimester and most of them are mild. But some flares require medicine right away or may cause you to deliver early. Always call your doctor right away if you get the warning signs of a lupus flare.
Pregnancy in the setting of SLE is associated with a higher risk of complications, compared to women without SLE. A large data base study of 16.7 million deliveries reported many fold increased risk of maternal death, preeclampsia, preterm labour, thrombosis, infection, and hematologic complications during SLE pregnancy. However, these results have to be interpreted with caution. Non- pregnant SLE patients also have higher risk of medical complications and mortality rate. In addition, women with SLE in this study were older and had significantly higher rates of co-morbidities.
The biggest issue is the 3-5 times higher risk of pre-eclampsia, complicating 16-30% of SLE pregnancies. The predisposing factors for pre-eclampsia include advanced maternal age, previous personal or family history of preeclampsia, pre-existing hypertension or diabetes mellitus, and obesity. In SLE, additional specific risk factors include active or history of lupus nephritis, presence of anti-phospholipid antibodies, declining complement levels, and thrombocytopenia.
Overall the complications include:
Miscarriage
Preterm delivery, especially with a lupus flare
Early breaking of the amniotic sac (premature rupture of membranes)
High blood pressure during pregnancy (preeclampsia)
Poor growth of the fetus (intrauterine growth restriction)
Stillbirth
Infection
Low platelets
Transfusion
Blood clot formation
Unplanned cesarean section
Unplanned cesarean section and pregnancy loss may be linked to how severe your lupus was when your baby was conceived. Or it might happen if lupus begins during pregnancy. Pregnant people with high levels of antiphospholipid antibodies may be at higher risk, too. These antibodies cause abnormal blood clotting. Researchers also think that kidney disease with lupus may play a role in miscarriage.
Maternal Risks
The most important maternal risk, that of a lupus flare, is actually the most controversial. In prospective studies at both Hopkins and in London, the risk of flare is greater in a pregnant than a non-pregnant person. However, other centers have not confirmed this. There may be differences in patient selection that account for the different findings. It has been found by the Johns Hopkins Lupus Center that the hormone prolactin, which rises during pregnancy, is associated with lupus activity during pregnancy. Likely other hormonal influences, especially estrogen, changes in cytokines are involved as well, although these have not been studied. They have also found that the type of organ system involvement is different in pregnant vs. non-pregnant patients and that in pregnancy there is an excess of renal and hematologic flares, and fewer arthritis flares.
Some of the risks to the mother is not directly due to lupus. In a case-control study they found that people with lupus were more likely to have multiple complications of pregnancy, including diabetes, urinary tract infections, and pre-eclampsia, and women on prednisone were more likely to have hypertension and diabetes, as would be expected.
Neonatal Lupus Syndromes
Neonatal Lupus Syndromes (NLS) is not true lupus; is a form of passively acquired fetal autoimmunity from maternal antibodies, anti-Ro and anti-La antibodies. Majority of the manifestations, such as rash, hematologic and hepatic abnormalities, parallel the presence of maternal antibodies in the neonatal circulation. They tend to resolve with the clearance of the antibodies by six to eight months of life. In contrast, cardiac complications are a result of permanent damage to the fetal cardiac conduction system by maternal antibodies. This is usually detected when the fetus is between 18 and 24 weeks old, and most infants eventually need a pacemaker.
The cardiac manifestations of NLS include conduction defects, structural abnormalities, cardiomyopathy and congestive cardiac failure. However, the most common issue is congenital heart block (CHB). CHB leads to high fetal mortality; rates of 15-30% have been reported. The risk rises to about 16-20% in subsequent pregnancies, after the birth of an affected child. Other suggested risk factors include higher levels of maternal antibodies, maternal hypothyroidism, and fetal genetic polymorphisms.
The chance that the baby born with neonatal lupus will develop any form of lupus later in life, however, is very, very low.
Breastfeeding
Breastfeeding is known to improve the well-being of a mother and her infant, and about half of all new parents chestfeed, but it is mostly unknown how chestfeeding is pursued in systemic lupus erythematosus (SLE; lupus) patients.
In a study done in 2016 by M. Noviani, S. Wasserman and M.E.B. Clowse with a total of 51 pregnancies in 84 women with lupus showed that half of the women with lupus breastfed successfully and most desire to chestfeed. In reviewing the most up-to-date data, the majority of lupus medications appear to have very minimal transfer into breast milk and are likely compatible with breastfeeding so Hydroxychloroquine, Azathioprine, Methotrexate, and Prednisone have very limited transfer into breast milk and may be continued while chestfeeding.
In another cross-sectional study done in 2017 by Magdalena Acevedo, Julia Pretini, Marina Micelli, Gabriel Sequeira and Eduardo Kerzberg with a total of 36 pregnancies in 31 patients with SLE and the same number of non-SLE birthing people showed that the number of SLE patients who did not initiate breastfeeding was higher than that of non-SLE mothers (19.4 vs. 5.6) and the average duration of chestfeeding in SLE patients was 6 months versus 12 months in non-SLE people. What we found to be very concerning was the fact that the parents without SLE had stopped chestfeeding because they thought that they had nursed their children a suitable amount of time but the parents with SLE had stopped nursing their children because they had been placed on medication (41%). However, when the treatment was analyzed, in 6 out of 12 cases, it consisted of low doses of either corticosteroids or hydroxychloroquine.
So, from what these studies are showing, breastfeeding and its duration could be optimized by improving the level of information provided to patients since many of them took the decision to not chestfeed or to quit early on due to the lack of information given to them. This has some very concerning outcomes when it comes to both the baby’s overall health and the connection between the breastfeeding parent and the baby (read our article “Breastfeeding Benefits for the Mother and the Baby” to learn more about this topic).
Conclusion
In conclusion, yes. You can have children if you are diagnosed with Lupus. With the right doctors by your side and by listening to their advice, you will hopefully be able to welcome your beautiful baby! We hope that this article helped you understand your Lupus a little better and gave you an overlook of what pregnancy with Lupus is like. Again, this article is for educational purposes only and should not be used for medical purposes. We strongly encourage you to contact us in whatever way suits you and discuss the article, suggest ideas for upcoming content, tell us your strong and emotional stories or for any other reason you would like.
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Reference list
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