The Main Event
by Rachel Adelson
Pregnancy is a special
time in a woman's life, but pregnancy with multiple sclerosis can make
the nine months perhaps a bit more special than desired. MS does not rob
women of motherhood, but the disease does require extra attention to ensure
that the pregnancy is safe, comfortable, and as happy as possible.
Here's the bottom
line from MS experts: Pregnancy, labor, delivery, and the incidence of
complications for the baby are no different for women who have MS than
for women without the disease. There is no evidence that MS impairs fertility
or leads to an increased number of spontaneous abortions, stillbirths,
or birth defects.
of research have also overturned the myth that pregnancy makes MS worse
over the long term. There are even some published studies suggesting that
pregnancy is associated with a better long-term course. That said, it's
still essential to guard the health of mother and baby.
Factors to consider
during the "trying" time
Talk to your MS physician first! Women who take any of the disease-modifying
therapies (Copaxone, Betaseron, Rebif, or Avonex) and men or women who
take immune suppressants (such as Novantrone or Cytoxan) should discuss
their plans to become pregnant with their MS doctor.
"The Food and
Drug Administration (FDA) recommendation is clear on disease-modifying
drugs. Women with MS who are actively trying to become pregnant should
not be on these therapies," said Patricia K. Coyle, MD, of the State
University of New York at Stony Brook's Health Sciences Center. She is
also a member of the Society's Medical Advisory Board. The main concern
is damage to the developing fetus, especially during the first weeks,
followed by concern that the medication might increase the risk of miscarriage.
recommend that women discontinue disease-modifying drugs one month, or
one cycle, prior to conception," Lael Stone, MD, noted. She is with
the Edward J. and Louise E. Mellen Center for MS Treatment and Research
at the Cleveland Clinic. "I always find this conversation a good
time to remind a woman to start on pregnancy vitamins to increase her
folic acid intake. All women should do this; folic acid prevents neural
Men with MS who want
to become dads don't have to discontinue disease-modifiers, but Dr. Coyle
would consider taking a man off any MS drug known to be a cytotoxic (or
cell-killing) agent. "I would want to reduce the risk of chromosomal
damage," she said.
Dr. Stone is also
cautious about chemotherapeutic agents, such as Imuran (azathioprine)
or methotrexate: "Both men and women should discontinue chemotherapeutic
drugs for a minimum of one month prior to attempting conception. Two to
three months would be better. For people using these medications,"
Dr. Stone added, "contraception is an absolute must."
To help women minimize
the length of time they need to be off their disease-modifying drug-a
question of heightened significance to older women, who may need more
time to conceive-Dr. Stone recommends using ovulation kits and other non-medical
methods to beef up the odds. "Theoretically," she observed,
"most fertility treatments are safe in MS, but there are virtually
no data on this."
These can be "trying"
a woman's symptoms intensify? Despite the FDA recommendation, which
is also the recommendation of the National MS Society's Medical Board,
there might be a situation in which a physician would suggest staying
on a disease modifier. The safety profile of Copaxone is somewhat
better than the interferon drugs in such a circumstance. In animal
studies, high-dose interferons caused increased rates of miscarriage,
while nothing similar has yet shown up in animal studies of glatiramer
someone say triplets?
I was diagnosed in 1997. It was a big blow to my marriage-we
had also had two miscarriages. But in 2000, I went the extra
-Nicole Thiroux, via e-mail
women must put conception on hold, to get the disease under control,"
said Barbara Green, MD, a member of the Society's Medical Advisory Board
and director of the West County MS Center in St. Louis. For how long?
"That depends on the pattern of that person's disease," she
said. "If the MS is out of control, the MS needs treatment. Attempting
pregnancy must be delayed so the woman can remain on medication."
Dr. Green sounded
a note of concern for men as well: "When young men have erectile
dysfunction due to MS, it's often hard for them to discuss it with their
doctor. Neurologists need to help their male patients talk, because ED
makes life so difficult for couples who want to conceive."
Despite all these
worries, most couples who want to become parents eventually find themselves
staying safe and comfortable
A neurologist knowledgeable about MS is probably comfortable with pregnancy.
(If not, the Society's Professional Resource Center has citations to the
professional literature for physicians.) The next task is finding an understanding
obstetrician who is willing to collaborate with the MS physician.
"Make sure your
OB knows you have MS," Dr. Coyle stressed. "You don't want it
coming up as a surprise. It's most helpful if your two doctors are at
the same center, or in the same referral network, so you might start your
search for an OB with your neurologist. She or he probably knows some
OBs. Ask the two to e-mail or speak to each other."
Dr. Green suggests
that women ask each doctor being consulted, "Would you mind sending
my other doctors copies of your notes?"
If the woman has little
to no disability from her MS, she can be considered a routine obstetric
patient. MS experts think a "high-risk" designation is generally
not warranted, unless there are other medical problems, or the woman has
significant difficulty with sensation or ambulation.
As for what to expect
symptom-wise, there's a shiny silver lining: Pregnancy appears to have
a protective effect on women with MS, perhaps because of the way pregnancy
changes immune response. The number of relapses or exacerbations goes
down during pregnancy, especially in the second and third trimesters.
an MS relapse does occur, the use of the steroid methylprednisolone
is OK, especially after the first trimester," Dr. Stone said.
"But some neurologists are uncomfortable treating a relapse during
pregnancy with steroids." Dr. Coyle sees nothing to indicate
that it is dangerous to use steroids to shorten MS relapses. If treatment
is advised and delivery is near, Dr. Green wants the woman to inform
the third member of her medical team: the baby's pediatrician.
have changed their perception of steroid use, Dr. Stone pointed
out. Today, steroids are sometimes ordered for a woman who has to
deliver early because they help mature a pre-term infant's lungs.
In other words,
while a severe MS relapse during pregnancy is trying for everyone,
there are safe and effective treatment options.
we just recommend rest and taking extra care of health concerns-
adequate sleep, nutritious food, gentle exercise, stress reduction,"
Dr. Stone said. "The same things every woman needs. We do need
to make sure that any symptoms are truly due to MS and not to pregnancy-related
changes." The neurologist and the OB should discuss which drugs
for symptoms such as bladder problems, depression, or spasticity
are safe to take during pregnancy.
At 25 years old I was diagnosed with endometriosis, fibroids,
ovarian cysts, and the onset of cervical cancer. After five
years of surgeries and treatments, I was told that I couldn't
I was diagnosed with MS. "See, it's good you can't have
kids," some well-meaning folks were saying. But in early
2000, I discovered I was pregnant. At the 10th week I started
bleeding. My husband and I went to the ER. They did an ultrasound
to see if there was an injury, and discovered my baby's heartbeat.
The ER doctor said there was a 75% chance that I would miscarry.
John was born on October 7, 2000, after an hour-and-a-half
labor. He is now two, and he's still a little ball of energy.
It hasn't been easy, but I would do it all again.
-Judy Blochowitz, Illinois
For the final phase,
an expectant couple needs to plan for the fatigue of late pregnancy. Will
the mother be able to work? Will the family need extra help at home, especially
if there are other children?
That last trimester
makes all pregnant women uncomfortable, and women with MS may expect problems
with bladder and bowels to intensify. "Women need to take particular
care to drink plenty of fluids and not become dehydrated, despite the
increase in bladder symptoms," Dr. Green said.
women become heavier, their center of gravity shifts, turning occasional
unsteady gait or loss of balance into a much bigger problem. It may
be time to install grab bars, especially in the bathroom, and to leave
a few sturdy chairs in strategic locations. For maximum safety, some
women use a cane or forearm crutches in the third trimester-or they
go mobile in a wheelchair.
of urinary infections also increases. Some doctors take monthly
urine cultures from all pregnant women with MS. "Urinary infections
must be medicated during and after pregnancy, as they could threaten
the lives of baby and mother," said Dr. Stone. "Most antibiotics
are considered OK. Treatment is best facilitated when there is communication
between the OB and neurologist," said Dr. Green.
It's baby time!
Long or short, labor and delivery are usually the same for a woman
with MS as for other women, with no special management needed. For
everyone, childbirth classes help reduce stress by teaching valuable
should make sure the MS doctor and the OB discuss pain management
well before the due date. A hospital anesthesiologist is probably
not up on the latest MS research literature, and could be gun-shy
about an acceptable option.
who are numb are going to experience labor pain," Dr. Green
noted. "MS is not like spinal cord trauma."
but it was worth it!"
During my fourth pregnancy, I was struck with a severe kidney
infection, followed by insatiable itching and numbness on
one side of my abdomen. The numbness and itching spread down
my leg and eventually to my toes. Eight years prior I had
had optic neuritis, and couldn't emotionally bear the thought
of an MS diagnosis.
seventh month of pregnancy, I was weak, experiencing severe
pain, and numbness from the waist down. Now, I asked for a
brain scan. I wasn't willing to just sit there and do nothing.
I had to know. My MS diagnosis finally came eight months into
my pregnancy. I convinced the doctors to induce labor four
weeks early. I delivered a healthy, eight-pound, one-ounce
baby boy named Simon. A true miracle and blessing.
tell anyone wondering if it was worth it that I can look at
Simon and know that I am still able to be what I want to be
and do what I want to do as a mother.
-Rebecca Gardner, Utah
is known to be safe. This is the tube-in-the-throat anesthesia that renders
a person completely unconscious. It may be required for a C-section, or
requested as a matter of preference, but more often women opt for anesthesia
that leaves them awake and aware.
An epidural involves
injecting medication on top of the "dura", which is a thick
outer layer protecting the spinal cord. Dr. Stone reports that a large-scale
study in France, published two or three years ago, showed that epidurals
are safe in women with MS. Spinal anesthesia, on the other hand, is usually
not recommended. "Anecdotally, there have been cases of MS relapses
following spinal anesthesia," Dr. Coyle noted.
Does prior treatment
with steroids require a "steroid prep" for labor? Dr. Coyle
strongly feels this is erroneous. "Only chronic or continuous steroid
use might prompt the steroid prep-and that's not how steroids are used
in MS," she observed.
On one point the MS
specialists all agree: The overwhelming majority of women with MS who
become pregnant are in early stages of the disease. Most are ambulatory.
In between relapses, they are generally healthy. It's extraordinarily
rare that a pregnant woman has so many sensory deficits that she won't
know when labor begins or can't cooperate with the contractions. If that
should be the case, Dr. Coyle advises women to discuss the situation with
their OB. "They may elect to induce labor or to have a C-section,"
Starting out: Breastfeeding
and other issues
The first six months after delivery may be difficult. Relapse rates rise;
in fact, there is an estimated 20 to 40% risk of a relapse during this
postpartum period. Knowing this, parents are wise to plan how they would
handle the situation. Happily, a large body of evidence shows that the
rise in relapse rate is temporary.
Many MS experts favor
restarting disease-modifying medication quickly to keep the disease controlled-but
no one knows if these drugs pass into breast milk. If they do, no one
knows if they are dangerous for the infant. There is only one truly safe
course for physicians to advise: avoid disease-modifying drugs during
Here's the dilemma:
Breastfeeding means giving up the protection of medication at a time when
the danger of relapse is increased. Breastfeeding may be fatiguing. (Sometimes,
no one else can handle that 3:00 a.m. feeding.) On the other hand, breast
milk is highly recommended for infants-and the experience of nursing a
baby is treasured by most women who do it. There is a great need for balance
in this area-and possibly for compromise by both the physician and the
A study in the International
Journal of MS Care, Winter 2002, followed 176 new mothers with MS. The
study included women who breastfed for only a few months, those who breastfed
for a year, those who fed their baby by both breast and bottle, and some
who resumed taking a disease-modifying drug while continuing to breastfeed
either some or all of the time. No firm conclusions can be drawn from
such mixed data-and caution should rule whenever mothers and babies are
Dr. Green noted that
some drugs used to control MS symptoms can be safe during nursing. Other
drugs may not be. A knowledgeable pediatrician will be the best guide,
but MS experts have some insight, too.
"I'd be wary
of the fatigue medications," Dr. Coyle said. She would also prefer
not to use steroids during breastfeeding. "But a woman could stop
breastfeeding temporarily and just use steroids for a couple of days."
is known to be safe for nursing mothers, and the implication is that other
antidepressants in this class can also be used," Dr. Stone said.
Dr. Stone also mentioned an encouraging preliminary study on the use of
IV immunoglobulin in the postpartum period to help prevent relapses for
women who are off their disease-modifying drug while breastfeeding.
MS experts decried
the "pump and toss" solution that can be heard through the grapevine.
Some women who take Avonex, the once-a-week interferon, simply skip breastfeeding
the day and day after their injection. They pump and dispose of the milk
on those days. There is no evidence that this is safe.
"Once you start
taking the drug, it is in your system," Dr. Green explained.
Stepping back from talk of drugs and symptoms, Dr. Green urges people
who are contemplating parenthood to think beyond pregnancy or the
immediate health of their baby to what happens 10 years down the road.
"MS is a lifelong disease, and it influences what pace you can
take," she said. Couples who are willing to take a clear-eyed
look at the long term are more likely to cope well with future challenges.
That said, MS
presents no proven medical risk for a healthy, normal pregnancy.
A little family planning can go a long and happy way.
My neurologist and obstetrician were very supportive of my
pregnancy. Since my general health was good, they felt I was
a fine mother-to-be. Childbirth, as I know it, was a miraculous
and memorable part of my life!
-Ann B. McKee, Kentucky