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Safer with than without

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.”