The Arthritis NewsletterSummer 2020
Delivering Hope: Susan Le Shares Pregnancy Journey While Living with Lupus
Despite the potential risks she may face, Susan is over the moon about motherhood
There is always a certain amount of nervousness when embarking on your first pregnancy journey. Now imagine being an expectant mother with lupus during the COVID-19 pandemic. We recently spoke with Susan Le, member of Arthritis Research Canada’s Arthritis Patient Advisory Board (APAB), about her current pregnancy, thoughts around medication, and advice for expecting mothers with lupus.
Women with lupus have a higher risk of experiencing pregnancy-related complications. However, Susan’s journey has been made easier and her anxiety kept at bay by creating a detailed, yet flexible plan with her team of health professionals and by having an ongoing honest conversation about the risks and benefits of medications, including antimalarials used to treat lupus symptoms and flares.
What has your journey with lupus been like?
I have systemic lupus erythematosus (SLE), also known as lupus. It’s an autoimmune disease that affects almost any organ in the body. I lived with years of unexplained pain before being given a pre-diagnosis of SLE. The symptoms worsened overtime and it wasn’t until I was hospitalized for pleurisy and pericarditis that I finally got the medications from a rheumatologist to reduce inflammation. Since then, I’ve been followed by a wonderful rheumatologist and a nephrologist.
What were your initial thoughts on pregnancy?
Managing my lupus has always been important. I had a candid conversation with my rheumatologist and nephrologist to make sure that my symptoms could be managed if I flared during pregnancy. As a mom-to-be, it’s very important that I provide a safe beginning for myself as a new mom and for my baby.
Do you have concerns about taking antimalarials during pregnancy?
My rheumatologist mentioned the safety and benefits of antimalarials so the thought of discontinuing my medications didn’t cross my mind. I’ve also heard that antimalarials may reduce the chances of preeclampsia and preterm birth.
Ultimately, an honest conversation goes a long way. Immediately after finding out I was pregnant, I spoke with both my rheumatologist and nephrologist and asked all my questions. They made sure I was comfortable with the plan we put in place.
Despite antimalarials being safe and recommended during pregnancy, a study by Dr. Mary De Vera, Research Scientist at Arthritis Research Canada, found that 30 percent of pregnant women with lupus discontinue their antimalarials in the first trimester. The study recommends pregnant women with lupus need to continue to manage their disease in order to reduce the risks of adverse pregnancy.
Can you tell us about the medications you’re currently on and how do you manage the side effects?
I am currently taking hydroxychloroquine and have been since the beginning. I’m also on immunosuppressive medications such as prednisone and tacrolimus.
Hydroxychloroquine is known to affect the eyes so I’ve been followed by an ophthalmologist annually. The other two medications are immunosuppressant which means it also suppresses the production of white blood cells. On top of working with a team of doctors, I have a trustworthy naturopath who helps me manage some of the side effects.
How important is hydroxychloroquine and other medications in your life?
To be honest, I’ve never stopped taking hydroxychloroquine to find out the impact it can have on my health. However, I’ve missed taking my medications on certain days due to brain fog and have experienced first-hand how it can take you back a few steps, even after a day. My rheumatologist has always explained the benefits, safety and side effects of my medications.
A recent study by Dr. J. Antonio Avina-Zubieta, Senior Research Scientist at Arthritis Research Canada, confirms that hydroxychloroquine is a life-saving medication for lupus patients and recommends patients to stay on it to avoid other complications that may arise from discontinuation.
Since lupus patients rely on hydroxychloroquine, how concerned were you when discussions
about the drug being a potential treatment for COVID-19 surfaced?
My initial concern was the same as what was heard amongst other arthritis patientsーa shortage and whether or not there’d be a problem getting it in the near future. I’m appreciative of the work the scientists at Arthritis Research Canada are doing to inform and to stress the importance of securing supplies of hydroxychloroquine for lupus patients as the COVID-19 pandemic unfolded.
Finally, if you could offer a piece of advice to women with lupus who are pregnant, or planning to
become pregnant, what would it be?
Build a team that will look after you. If you feel like it’s important, you can also work with a naturopath and doula like I have. I love having both perspectives in my pregnancy journey.
Dealing with lupus and pregnancy can bring on more anxiety than a usual pregnancy because it is considered high risk. However, try as much as you can to enjoy the journey. This is what a lot of people told me to do and I really appreciated those comments, especially because of COVID-19.
Being pregnant with lupus can be more tiring but it’s seriously worth it. You’ll need to make sure you have a supportive partner who is always onboard. Remember to schedule in rest periods, because the fatigue is more than the usual pregnancy fatigue. By giving yourself grace and time to do that, it will help you settle into your pregnancy and connect with the bundle of joy growing inside of you.