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MS and Pregnancy:
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.

Thankfully, decades 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.

"Most doctors 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 tube defects."

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" times indeed.

Suppose 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 acetate (Copaxone).
Did 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 mile: triplets!
-Nicole Thiroux, via e-mail

"And sometimes 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 pregnant.

Being pregnant: 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.

"If 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.

Pediatricians 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.

"Mostly 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.

Against all odds
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 have children.

In 1999 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.

As 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.

The possibility 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.

Special Delivery: 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 relaxation techniques.

The parents-to-be 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.

"Even women 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.

By the 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.

I would 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

General anesthesia 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," she said.

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 breastfeeding.

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 new mother.

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 involved.

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."

"Zoloft (sertraline) 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.

The family way
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


For additional information
 Family and Friends
 MS and Pregnancy
 Who Gets MS?
  Rachel Adelson writes about science and medicine from her Raleigh, NC, office.  
  Last updated May 2006