It’s Been a Year

Time flies after you have a baby. The sleepless nights, that extend on for months, do fly by, although it seems like it’s been an eternity since you had a good night’s sleep. One thing, I hadn’t anticipated after having my son was the huge lupus flare.

I had been warned at my high-risk appointments, that although my disease had been inactive for two years prior to getting pregnant, nearly everyone with lupus, who has a baby has a problem after delivery. We had a plan, and we followed the plan while I was in the hospital. But after I left, that’s where the plan stopped. I didn’t receive any more injections, they were to keep myself from clotting, and I wasn’t concerned.

I went home with my son, and started living the exhausting life we had been so excited about for the previous 10 months. I didn’t think anything of the things that started happening to me following giving birth, at first.

After 4-5 months I started wondering if what I was feeling was still normal for a new mom, or something more. The exhaustion seemed so much worse than what other people talked about, even to my husband. He seemed to be doing better than I was. Then “weird” things started happening, which I should have immediately recognized, but was in denial. I had a new baby at home. The LAST thing I wanted was to have a flare, have active disease, and be back on meds.

My baby started sitting up on his own at 5 months, just when I was no longer able to sit up on the floor with him and play with him. In the back of my mind, I knew what was happening to me. The all-too-familiar feeling of not even being able to move was setting in. There it was.  Then the fever came. I immediately went to by family physician. I did NOT want to spread a germ to my infant son. That’s when I knew I was in the wrong office.

The “Crazy” Look

My physician was on vacation, and I had to see one of the Physician Assistants. When I started describing the overwhelming feeling of nausea, sickness, low grade fever, along with my exhaustion, all they could do was stare at me like I was nuts (the nurse also looked at me like I was a crazy person). The initial reaction was I was pregnant again. I knew I wasn’t. I had taken a pregnancy test just to be sure myself. They tested me again – negative. I knew before I left that office, I was in the wrong doctor’s waiting room.

I went through a battery of tests that day – all of which showed “nothing.” (None of the tests were related to lupus – even though I had told them I was a lupus patient). I called the rheumatologist the next morning. I “re-educated” myself that evening on flares, and symptoms and sure enough they were all there. The symptoms I had before pregnancy and the new symptoms.

After describing my feelings to my rheumatologist, they believed it best to get on the meds, and the blood work followed. For the first time since my diagnosis, my blood work showed signs of a flare and disease activity.

I left the office with mixed emotions. I was relieved that for once the tests proved what I had been diagnosed with. However, I cried on the way home. My disease was clearly more active at a point in my life when it was the last thing I wanted to think about. I had to snap out of it though. I had to get it together. My baby was waiting at home for me and he was full of energy and ready to go.

I got on the meds, and they slowly have been working. I don’t feel as good as I did before when I took them, but obviously my disease is at a different level than before.

Pregnancy & Lupus

The terrific news today is that most women with lupus conceive and have normal babies. Conception isn’t usually the issue with a female with lupus. As long as a woman’s cycle is relatively regular conception can occur.

I learned from my high-risk visits, that it is very important that disease activity be relatively low for a healthy try at pregnancy. With very active disease it is possible for a woman with lupus to have physical problems , and also to lose the baby to miscarriage.

Dr. Wallace studied women with lupus and their pregnancies. He found that low-risk mothers, those with inactive disease, lack the Ro antibody, and off all meds have the same pregnancy risks as “regular” women. High-risk mothers, on the other hand, have a very high risk of organ failure and fetal death or complications. High-risk mothers are those with active disease in the heart, and respiratory organs, as well as kidneys. High risk doesn’t always mean the woman and baby won’t make it through. Dr. Wallace found that 20 percent of these mothers make it through with a healthy baby. Most mothers miscarry and the remaining 20% develop serious complications (such as organ failure).

What will happen?

As I was told by my physician, and as Dr. Wallace states, there is a 40% chance the disease will be unchanged, 40% chance of flaring, and a 20% chance of disease improvement during pregnancy.

I was asked to take a baby aspirin during the entire pregnancy. This was supposed to decrease my risk of having a clot forming in the cord and blocking blood flow to my baby. Most regular women are advised against aspiring during pregnancy, but for some women with lupus this might be the thing that saves their baby.

The good news is that 67% of lupus pregnancies produce a normal birth.

Should we be careful and think about our unborn child and ourselves? Of course we should. But pregnancy, and the aftermath, shouldn’t be feared, as long as you have chosen a safe and healthy time to conceive and deliver your child, based on your disease activity level.

As always, you should consult your own physician to help you decide whether pregnancy is safe for you and your family.

The Lupus Book. Dr. Daniel Wallace, M.D.