Photo by Chung Chow
As a teenager, Jessica Oates started having trouble with her joints and her breathing. “I had sore joints, and carpal tunnel. I thought that was kind of weird.” She was also having chest pains.
“You kind of think about how the rest of your life is going to look and are you going have a normal young adult life?” she says.
On May 17, ARThritis Soiree 2018 will be held at Hotel Vancouver to support arthritis research.
Oates was diagnosed with SLE, often just called Lupus. She remembers the date all too well, “Aug 20, 2008. I was 17 when I was diagnosed. I turned 18 in the hospital. It affects my lungs as well. It is called shrinking lung syndrome.”
“It means everything’s a little harder. So walking is a little harder. Walking up stairs is a little harder. You deal with a lot of chest pain. It pushes on the inside,” she says.
Oates’ rheumatologist finally settled on Benlysta, the only biologic approved for use in Lupus. It worked the best of all meds Oates tried. It doesn’t get rid of her Lupus but keeps it in check the best of anything she has used.
Part of the normal adult life Oates wanted was children: “I always knew I wanted a family. I knew I wanted to be a mommy.”
But, her disease offered challenges, “My doctors were very concerned about me getting pregnant. There’s a higher miscarriage rate with women who have lupus because when you get pregnant your lupus can go after the embryo and cause a miscarriage,” says Oates.
When it came to the idea of having a baby, Oates said she was, “More determined than scared.”
Dr. Mary De Vera of Arthritis Research Canada (ARC) and the University of British Columbia (UBC) studies the safety of life-saving arthritis drugs in pregnant women. Because some types of untreated arthritis actually shorten a patient’s life, continued effective medication is vital to living a long life, not just for pain relief and joint health.
De Vera stresses that arthritis is not just an old person’s disease. Children live with it as do women of child-bearing age.
“I’m looking at all arthritis medications. The problem is a lot of these drugs, they go to market not having clinical trial data on pregnant women.”
When Tamara Komuniecki was pregnant nine years ago, she didn’t have safety data to rely on. She decided to stop all treatments for her rheumatoid arthritis.
“I think your first instinct as a mother to be is to be as pure in pregnancy as possible,” she says.
Today, thanks to De Vera’s ARC study, patients like Komuniecki can stay on most of their medicine with a clear conscience. De Vera’s research shows it is actually safer for expectant moms to continue the majority of arthritis treatments, including the newer and highly-effective biologics, than to stop.
De Vera says, “We talk about risk-benefit decisions in pregnancy.” She says women no longer need to say, “I’m going to stop taking this medicine because I don’t want the medication to harm the baby.”
In fact, De Vera says, “Arthritis itself could harm the baby.”
She lists some of the problems known to be linked to untreated arthritis in pregnant moms, “There are studies that have shown for example, a higher rate of c-section deliveries with women with Rheumatoid Arthritis and women SLE (Lupus) compared with the general obstetrical population. Babies born to women with arthritis have lower birth weight compared to women without arthritis.”
De Vera’s list of risks continues, “Small for gestational age babies. Data also says having arthritis is associated with a risk of congenital malformations in the babies.”
Komunieck was surprised to learn about the more recently-discovered risks autoimmune diseases posed to a developing fetus, “I did not know that,” she says, “I did have a premature baby. He was born at 28 weeks. He was a tiny little fella. I did have a still birth before that.” They named their stillborn son, Henry. “I didn’t come this through unscathed. We did have a good outcome with our second.”
In fact, some kinds of autoimmune arthritis are linked to increase risk for repeated miscarriages. Treatment may reduce the risks to a developing fetus, making it more likely that a woman can become a mom to a healthy baby, in spite of her arthritis.
There are a few meds that should not be taken during pregnancy, including some over-the-counter pills and herbal preparations available without prescription. If in doubt, ask your pharmacist or arthritis specialist before you get pregnant, or as soon as you know you are pregnant, to see if what you are taking is safe for you and for baby. Even some herbal teas need to be avoided.
Today, Komuniecki has a thriving business on Granville Island, Delish General Store, and a healthy eight-year-old son, Finn who is the light of her life. She still has rheumatoid arthritis but with effective treatment, she lives a full life.
De Vera too has children, one in school and two year-old Valery. DeVera brought along her youngest to our photo shoot, on their way to a “mommy and me” day. She says having been pregnant herself and having children of her own gives her empathy for the women and babies she studied. She knows how precious children are. Asked her motivation for her research, deVera says, “To provide reassurance on safety. I want the women to have the information to make the decision about their medication use.”
And the bottom line? “It can be safer for the baby to stay on your arthritis medications than to quit. Talk to your pharmacist if you’re thinking of getting pregnant or are pregnant.”
Oates, now 28 and a new mom with four month-old twins says of parenthood, “It’s the best feeling in the world. It truly is.”
Researcher De Vera says, “Pregnant moms and babies are the most wonderful things. I love babies.”