Doctor says newly diagnosed scleroderma
patients should avoid pregnancy for three years
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When Patty and Michael Roy of North Tonawanda, N.Y.,
began to talk about starting a family, they wondered
if Patty would be up to the rigors of pregnancy and
childbirth — not to mention caring for a baby
once it arrived. They wondered how pregnancy would affect
her health and how her health would affect their unborn
baby. They wondered how — and if — Patty
could get along nine months without the medications
that kept her rheumatoid arthritis (RA) in check but
had the potential to harm their child.
After much discussion with Patty's doctor and heart-to-heart
talks between themselves, the Roys decided to start
a family. Their baby boy, Alec Michael, arrived Sept.
6, 2000 — perfectly healthy and within days of
his due date. (See page 60 for more on Patty's life
with her new baby.) The Roys are not alone. Couples
everywhere contemplate parenthood with a mix of anticipation,
awe, uncertainty and fear. But when the woman has arthritis,
the fears and uncertainties can be magnified.
"I know the miracle that I have now, but when
deciding whether to have a baby, I also didn't want
to put myself in physical danger," says Patty,
who, at 32, has had rheumatoid arthritis for 14 years.
"If I couldn't take care of a child, it would be
sort of selfish to have one."
Arthritis has the potential to affect pregnancy at
every stage, from conception to the weeks following
birth. And pregnancy can make a difference, either good
or bad, on a mother's arthritis. But predicting the
course of pregnancy — much less the course of
a variable disease during pregnancy — is impossible.
Despite such uncertainties, doctors who have studied
arthritis during pregnancy and pregnancy during arthritis
have found some common — and some not-so-common
— problems shared by women at certain stages of
pregnancy and with certain forms of arthritis and related
diseases. They have also made findings that should ease
fears and reassure couples who long for a baby, as well
as those who find they are unexpectedly expecting one.
You won't find this information in your typical pregnancy
books. For the most part, it is buried in scientific
textbooks and journals. That's why Arthritis Today has
culled the literature and spoken to the experts to produce
this stage-by-stage mini-guide to pregnancy for women
with arthritis. If you're expecting or just contemplating
pregnancy, you'll want to read this and save it along
with your other pregnancy books.
Conception
When a woman with a chronic disease wants a baby, one
of her first questions is, "Can I conceive?"
For the vast majority, the reassuring answer to that
question is yes, according the experts.
Of course, some women will experience fertility problems
unrelated to their arthritis. In fact, an estimated
one in five couples have difficulty conceiving regardless
of any known health problems. For the vast majority
of people with arthritis, the odds are probably no worse.
If fertility is a problem, drugs — rather than
the disease itself — are likely to be responsible.
The biggest offender is cyclophosphamide (Cytoxan),
an immunosuppressive drug given for severe autoimmune
disease, including lupus complicated by severe nervous
system disease or kidney disease. "If a woman is
over 30, she has about a two-thirds chance of infertility
if treated with Cytoxan," says Michelle Petri,
MD, associate professor at Johns Hopkins University
in Baltimore. The reason is that Cytoxan can cause premature
ovarian failure, which renders a woman irreversibly
infertile. However, recent research shows that the hormonal
drug leuprolide (Lupron) may help reduce the risk of
sterility in women taking Cytoxan.
Although most other drugs don't have severe effects
on fertility, some can affect an unborn child from the
very earliest days of pregnancy. The effects of certain
drugs can remain in the body for a period of time after
you stop taking them, so you should work with your doctor
to taper off harmful medications — and perhaps
switch to less risky medications — for at least
a few months before you try conceive.
Also, no woman with scleroderma should attempt to get
pregnant within three years of diagnosis, because complications
of that disease, including hypertension and kidney damage,
are likely to show up within the first three years of
the disease and could complicate a pregnancy, says Virginia
Steen, MD, of Georgetown University in Washington, D.C.
If you get through these critical early years of the
disease without complications, it's probably safe to
have a baby, she says.
Before you get pregnant is also the best time to speak
to your doctor about prenatal vitamins and supplements
of folic acid, which can help reduce the risk of certain
birth defects.
First Trimester (weeks
1 through 13)
Whether you've contemplated, planned and prepared for
a pregnancy for years, or if one has taken you by surprise,
the result is the same — you're pregnant!
For any woman, the first trimester is a critical period
when the baby's vital organs are forming and when medications
and lifestyle habits (such as smoking, drinking, diet
and drug use) can affect that development. It is also
the most perilous time for an unborn baby — as
many as 20 percent of all pregnancies end in miscarriage
during the first trimester, often before a woman is
even aware she is pregnant. For women with arthritis-related
diseases, there are additional concerns:
For all diseases:
Drugs continue to be a concern in the first trimester
and throughout pregnancy. If you didn't discuss medications
with your doctor before you got pregnant, now is the
time, says Dr. Petri.
Some drugs, such as cyclophosphamide, can cause birth
defects. Others, such as methotrexate, can cause miscarriages.
If you're taking nonsteroidal anti-inflammatory drugs
(NSAIDs) such as ibuprofen, naproxen or ketoprofen,
your doctor may let you continue using them, at least
for a while. The greatest risk of these drugs comes
later in pregnancy, when they may interfere with labor,
affect amniotic fluid production or cause excessive
bleeding during delivery. If you need medications to
keep your disease under control, your doctor may put
you on a glucocorticoid, such as prednisone, that reduces
arthritis inflammation but crosses through the placenta
only minimally.
For lupus:
If you have lupus, there's a possibility that your disease
may flare or become more active during pregnancy, although
research results have been inconsistent on just how
great that possibility is.
Whether pregnancy affects your lupus or not, there
is the chance that lupus may affect your pregnancy,
particularly if you have antiphospholipid antibodies.
These antibodies, which are present in as many as 30
percent of people with lupus and a much smaller percentage
of otherwise healthy people, can cause blood clots in
the placenta that can lead to miscarriage. In fact,
they may be responsible for as many as 10 percent of
all miscarriages. "Although antiphospholipid antibodies
are usually associated with pregnancy loss in the second
or third trimester, there is a subset of women who have
very early loss from antiphospholipid antibodies,"
says Dr. Petri.
Treating the antibodies with the blood-thinning medication
heparin and aspirin can help prevent clots. If you have
lupus, it's essential that you be tested for antiphospholipid
antibodies. You should also be tested for two other
antibodies, anti-Ro and anti-La (also known as SS-A
and SS-B), that can cross the placenta and are associated
with inflammation in the baby's heart. This can lead
to a condition called heart block which interferes with
the electrical impulses that tell the heart to beat.
(More on that in the second trimester.)
For scleroderma:
Much like lupus, there is some evidence that scleroderma
may become more active during pregnancy, but this, too,
is debated. Dr. Steen has found the disease generally
does not get worse during pregnancy, provided the woman
has waited past the first three years of diagnosis —
the most critical period in the development of complications,
whether a woman is pregnant or not. On the other hand,
scleroderma can affect later stages of pregnancy.
Second Trimester (weeks
14 through 27)
You've reached one of the most exciting times of pregnancy.
However, this is the time your disease may affect your
pregnancy or when pregnancy may have an effect —
either positive or negative — on you.
Scleroderma:
If you have scleroderma and worry that your stiff skin
won't accommodate your expanding belly, that's one worry
you can put aside, according to Dr. Steen, who says
she has never seen a woman whose skin interfered with
or was damaged by pregnancy.
Likewise, concerns about Raynaud's phenomenon —
a common complication of scleroderma and some other
arthritis-related diseases in which the blood vessels
to the extremities go into spasms in response to cold
temperatures or stress — can be laid to rest.
Raynaud's often eases as your blood flow increases in
pregnancy.
A final — and extremely important — caution
at this stage for women with scleroderma is to watch
your blood pressure carefully. High blood pressure,
which is a potential complication of both pregnancy
and scleroderma, can lead to kidney failure, says Bruce
Smith, MD, professor of medicine at Thomas Jefferson
University in Philadelphia.
Lupus:
If you have anti-Ro or anti-La antibodies, this is the
time the effects on the baby become evident. Beginning
around your 15th week of pregnancy, your doctor will
monitor the fetus by fetal echocardiogram either monthly
or weekly, depending on your antibody levels (called
titers) and medical history. Echocardiogram is a procedure
that uses ultrasound waves to view the action of the
heart as it beats. If heart block is detected, your
doctor will probably prescribe dexamethasone, a glucocorticoid
medication that crosses the placenta to help minimize
the inflammation. Your doctor will continue to treat
and monitor you throughout your pregnancy, because heart
block may necessitate early delivery of the baby. If
your baby hasn't developed heart block by week 25, it's
not going to happen, says Michael Lockshin, MD, professor
and director of the Barbara Volcker Center for Women
and Rheumatic Disease at the Hospital for Special Surgery
in New York.
Lupus and scleroderma:
Although usually thought of as a late pregnancy event,
toxemia (also called preeclampsia) — high blood
pressure that develops during pregnancy and is accompanied
by excessive fluid retention and protein in the urine
— may occur as early as 25 weeks for a woman with
one of these diseases. People with antiphospholipid
antibodies tend to get toxemia earlier. Treatment involves
bed rest. The problem doesn't resolve until the baby
is born, so your doctor may have to deliver the baby
by Cesarean-section as soon as it is mature enough to
survive outside the womb, as late as possible and not
before the 25th week of pregnancy.
Another problem that can occur in both diseases is
placental insufficiency, a condition in which blood
flow through the placenta isn't sufficient to supply
the necessary nutrients to the baby. The reason may
be thickening or blockage of the blood vessels in the
placenta and the result may be a low birth weight baby.
Rheumatoid arthritis:
If you have rheumatoid arthritis, your pregnancy will
probably not be influenced much by your disease at this
or any other stage. But pregnancy is likely to influence
your disease in a positive way. Approximately 70 percent
of women with RA experience an improvement in symptoms
beginning in the second trimester and lasting through
about the first six weeks after delivery, says Dr. Smith.
Exactly why most women with RA improve while others
don't is unknown, but research suggests that the father's
genetic contribution may play a role. The more genetically
dissimilar a baby is to its mother, the better —
at least as far as the mother's disease goes.
Third Trimester (weeks
28 through 40)
For women with arthritis, the last trimester may weigh
especially heavily, because certain diseases can affect
these final three months of pregnancy as well as delivery
and, in rare cases, the baby's health. In many cases
the baby arrives during what should be the final weeks
and months of pregnancy — the weeks in which most
healthy women are attending baby showers or putting
the final coat of paint on the nursery.
Lupus:
In the rare event that your baby developed heart block
during the second trimester, he or she will likely be
scheduled for delivery sometime during this 12-week
period, especially if dexamethasone didn't arrest the
condition. Your doctor will continue to monitor the
baby closely, and if there are signs that the heart
is in trouble, he'll deliver the baby immediately. "You
can't treat the baby for heart failure inside the mother,
at least not yet," says Dr. Lockshin. In some instances,
women with lupus experience premature rupture of membranes.
In other words, their water breaks before their baby
is due. In those cases, labor may occur spontaneously
or the doctor may induce labor or perform a C-section,
because once the amniotic fluid leaks there is a risk
of infection, says Dr. Petri.
Lupus and scleroderma:
Preeclampsia and placental insufficiency continue to
be risks. If you have preeclampsia, you'll continue
to stay on bed rest (possibly in the hospital) for the
rest of your pregnancy. Placental insufficiency may
lead to premature labor. Either of these conditions
may necessitate an early delivery.
Delivery
The big day has finally come — a day that all
women look forward to and probably dread, at least a
little. Uncertainties about labor pain, pain-relief
methods and most of all, the pregnancy's outcome, concern
all mothers-to-be. For women with arthritis, there can
be additional uncertainties and concerns.
All forms of arthritis: "Any form of arthritis
that involves the hips may make vaginal delivery difficult,"
says Dr. Lockshin. "The biggest problem is that
you have to be able to spread your legs fairly wide.
A baby is a pretty big package to get through there."
For that reason, women with arthritis (even if their
disease is inactive and their pregnancy uncomplicated)
may be more likely to deliver by C-section.
People whose arthritis involves the spine may have
additional or different concerns. A problem such as
ankylosing spondylitis may make it difficult for a doctor
to perform an epidural, a procedure in which pain medication
is injected between the vertebrae directly into the
outer layer of the spinal canal; it is the most common
form of pain control used in both vaginal and Cesarean
births. Women with severe spinal involvement should
discuss alternative pain-relief methods with their doctors
before delivery. If a C-section is necessary, you may
require general anesthesia.
Scleroderma:
Although women with scleroderma may be concerned that
a lack of tissue "stretchability" may present
a problem during delivery, Dr. Steen says that is very
rarely the case. In the event that a woman with scleroderma
does have to a have a C-section, both doctors and patients
have worried about how the incision will heal. Dr. Steen,
however, has found no increased healing problems among
those patients.
Post-partum
You've made it. The long months leading up to delivery
are over. You may feel a sense of relief or sorrow —
or a combination of the two. If you have rheumatoid
arthritis, you may also be dealing with a disease flare
at the same time you are trying to recuperate from childbirth
and adjust to parenthood. Many women with RA experience
flares in the weeks following pregnancy. Other diseases,
including scleroderma may become more active for a while
after delivery, too, although doctors aren't sure why.
It could be related to hormonal changes or the fact
that a woman has probably spent a number of months off
the medications that usually control her disease, says
Dr. Steen.
Infection is a possibility after any delivery. If you
are taking medications that suppress your immune system,
however, infection is more likely. Most infections can
be cleared up fairly easily and quickly with available
antibiotics. Certain medications may also interfere
with breast-feeding, either because they suppress milk
production or pass through the breast milk and are unsafe
for the baby. If you would like to breast feed, discuss
the best medication choices with your doctor.
If your baby came prematurely, he or she may have to
spend some time in the neonatal intensive care unit.
If your baby was born with heart block, he may need
to have a mechanical pacemaker implanted. Fortunately,
most babies do well, says Dr. Petri and, except in the
case of heart block, a mother's arthritis probably won't
have a lasting effect on an unborn child.
A more common and much less serious problem for babies
of mothers with lupus is a skin rash. "It could
be anything, but often it is spots all over [the baby]
or just on the face," says Dr. Lockshin. For a
physician who is not familiar with the problem it may
appear to be something more serious and for a woman
who doesn't know to expect it, it can be terrifying.
"I make sure my lupus patients know about this
in advance. And I tell them if their baby is born with
a rash to call me first before they listen to what anyone
else thinks it is." Fortunately, the rash resolves
with time without any permanent effects.
Happily Ever After
Although pregnancy and delivery are now behind her,
Patty Roy still wonders about the days ahead: Will she
be able to tie Alec's first real shoes? Will she be
able to chase him when he's an active toddler? Will
she feel up to sitting on those hard benches at his
little league games? Most of all, she wonders, will
her son someday have arthritis, too?
Her doctors reassure her that the chances of her child
developing RA are low. Experts say the same for other
forms of arthritis. Furthermore, arthritis can occur
in anyone — whether the child's mother has the
disease or not. "We have to put it into perspective
that it's not just me — it's a risk for anyone,"
says Patty.
As her doctor had warned her it might, Patty's RA became
more active after pregnancy. She was forced to go on
some stronger medications, which she doesn't like, but
she has learned not to let fears about arthritis, medications
or her ability to care for her son rob her of the joys
of these early months with him. "I have learned
not to worry about what I have no control over, so we'll
just have to take it as it comes."
No, there are no guarantees of a smooth pregnancy or
healthy baby whether you have arthritis or not, but
the odds are with you, says Dr. Petri. Not too many
years ago women with chronic diseases were often advised
not to get pregnant. But that is less and less the case.
With adequate precautions and proper medical care, most
women with arthritis-related diseases can have successful
pregnancies and healthy children.
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