Aside from the concern of passing mast cell disease on to their children, many women wonder if their diagnosis will affect their pregnancies so I thought I’d do a little research into the topic.
I was undiagnosed (and therefore unmedicated) with MCAS throughout my own three pregnancies so I have my own anecdotal experiences to offer, but I wanted to see what the experts are saying about mast cell disease and pregnancy first.
It didn’t take long to find an article published on MedScape entitled: Mast Cell-Mediated Disorders in Pregnancy. In it, the author states:
Mast cells participate in “implantation, placentation, and fetal growth,” according to the authors, and also have a vital role in the fetomaternal interface. These cells have both an immunologic and a nonimmunologic role in pregnancy. In early pregnancy, mast cells modulate “tissue remodeling, angiogenesis and spiral artery modifications.” Yet later, mast cells have the potential to disrupt pregnancy, because mast cell-mediator release is associated with preterm delivery.
I bolded the last part, just to highlight that there is apparently a known risk of preterm delivery due to mast cell-mediator release. So there’s one risk.
The same article addresses both urticaria (hives) and mastocytosis and their effect of pregnancy:
Urticaria. As with asthma, chronic idiopathic urticaria may be influenced by the hormonal changes of pregnancy, for either better or worse. The safety of higher-dose antihistamines (beyond the level of US Food and Drug Administration approval) has not been studied in pregnancy, and because mast cells mediators, including histamine, participate in uterine adaptation, there is reason for caution. One type of urticaria in pregnancy—pruritic urticaria papules and plaques of pregnancy—has not yet clearly been linked to mast cells, but antihistamines are effective in this condition.
Mastocytosis. The article references a review by the Spanish Network on Mastocytosis that followed 45 pregnant patients with the disease and found that “in most cases mastocytosis-related symptoms remained unchanged throughout pregnancy and after delivery compared to the pregestational clinical profile.” Pruritus, flushing, and gastrointestinal symptoms presented or worsened in only a minority of cases. Idiopathic anaphylaxis was less common. Patients with cutaneous mastocytosis experienced more mast cell-mediated symptoms than did those with indolent mastocytosis.
Since the symptoms of MCAS (mast cell activation syndrome) and mastocytosis are virtually identical, I think we can safely assume that the following applies to both forms of mast cell disease and pregnancy:
Overall, mastocytosis worsens in up to one third of women during pregnancy, and yet about the same percentage improve clinically during the first trimester, similar to what is typically seen with asthma during pregnancy. Worsening of symptoms in some patients might be due to the reduction in antihistamine dosing chosen for fetal safety.
As I said earlier, I was pregnant three times in my twenties, and carried all three babies to full term. I delivered naturally each time. I used epidurals with the last two and had no issues (that I remember).
Looking back now, I had a lessening of some symptoms (mostly inflammatory ones) and a worsening of others (allergic ones like hives and itching), but overall my pregnancies were all healthy and normal and I loved being pregnant. I believe being pampered by a doting husband helped my own pregnancies go much smoother than they otherwise would have.
It was right after I gave birth and was breast feeding that I personally seemed to have more problems than I had during my pregnancies. Interestingly, my worst pregnancy symptom-wise was during a very stressful time in my life. I was caring for my husband’s dying grandmother throughout most of it and attended her funeral in sweltering heat at 8 months along.
I was definitely more triggered and reactive during this time and my son from that pregnancy has also been dx’d with MCAS.
We suspect all three of our kids have some level of mast cell disease but with him I felt something was “off” (even though overall the pregnancy was normal) and even told friends and family that I was concerned there would be something wrong with him!
Now I get to live with the knowing that I passed this along to at least him. 🙁
Still, these are just my experiences and with what little data there is from the experts, the next best thing is to see what patients themselves are saying. I found some conversations on old forums like this one here that seem to reflect some of my own experiences with mast cell disease and pregnancy.
Then the question naturally comes around to: if you had known you had MCAD would you have ever gotten pregnant to begin with?
I love how a poster named Lisa from that forum conversation summed it up:
Yet, regardless of this, even if I were living with this stage of my disease during my pregnancies, I have no doubts that I would not change a single thing!!! Any disease is going to rob us of what we consider our normal lives independent of what disease it is. They ALL encroach upon us one way or another – it´s not normal to be chronically ill! Yet unless it is such a disease as to endanger my life, why should I allow it to rob me of my motherhood? Yes, masto complicates EVERYTHING we do and makes it harder to deal with just the simple living of life, but that still doesn´t mean that we stop living!!! We only have to PLAN it all more carefully!!
So, there is no way that I would change having had my 3 tremendous children!! They ENRICH my life and are a real blessing to have in spite of the fact that I can´t always keep up with them, and they are even a source for some of my triggering at times. I still would not change a thing!!!
Would I do it again?
I honestly don’t think I would knowingly give my child a life sentence of mast cell disease, knowing what I know now. As much as I loved being pregnant and love being a mom, I probably would have prevented pregnancy altogether if I’d have known. 🙁
Aside from personal feelings or experiences with mast cell disease and pregnancy, the experts have this to offer as a bit of a final word on the topic (at least for this post):
Physicians treating mast cell diseases in pregnancy should remember that mast cells and their mediators are clinically relevant not only in disease, but also in the uterus of the healthy patient. Other than anaphylaxis, however, it is not clear what other manifestations of mast cell disorders post a risk for the fetus. As with asthma, hormonal changes of pregnancy have an unpredictable influence on the underlying mast cell condition.
Obviously, if you have mast cell disease, or suspect you do, the best thing to do is talk to your mast cell specialist with any concerns you have about getting pregnant — before you get pregnant, if at all possible.
The top questions I would personally have would be:
- do I need to change or adjust my medicines?
- how will my hormone changes affect my disease?
- do I need to be monitored for issues (such as malabsorption) that may impact my baby?
- what if I have anaphylaxis during pregnancy?
Planning ahead by lowering your trigger risks (stress, fatigue, etc) as much as possible seems like a good idea, too. Of course, as Lisa pointed out, babies and children can be mast cell triggers themselves but they can also be SUCH a blessing!!