Hi all,
I attended the Sjogrens Syndrome seminar today and had an opportunity to ask
about lactation. The medical advisor for the Philadelphia Regional Chapter is
Dr. Frederick Vivino who is at Jefferson Medical Center.  His response to my
question:
         Most women who are diagnosed with Sjogrens are in their 40-50s.
Therefore, they don't have much (I interpreted this as ANY) experience with
breastfeeding mothers. He did say that if the woman is diagnosed with Sjogrens
at a young age her symptoms may not be bad enough to affect her glands.
However, in people with Sjogrens - primarily women - the immune system attacks
the moisture-producing glands. The ones most often mentioned are the eyes,
mouth, nose and vagina. However, it stands to reason that it could also affect
mammary glands and their ability to produce milk. This is all conjecture.
There are no studies.
        There is a definite genetic and hereditry link with Sjogrens. So if
the woman's sister has it and she is starting to display symptoms, she most
likely has it also.  There was a woman at my table who was diagnosed in her
40s. She has twin daughters who are now in their 20s and they both have it as
well.
        There is a new drug called Salagen that was just approved by the FDA
in February for Sjogrens. It works very effectively in stimulating the
exocrine glands and is prescribed especially for the symptom of dry mouth. Dr.
Vivino wondered whether it might also help with lactation. Does anyone know if
there is any problem with breastfeeding women taking this drug?
       There are some counseling issues to consider if a woman in your care
has Sjogrens. It is a disease that fools everyone. Physicians get about 10
minutes on it in medical school, (probably about the same amount of time as
breastfeeding) so may not be familiar with it. Women many times go through
YEARS of misdiagnosis before finding a doctor who recognizes it (about 10
years in my case). It is also a disease that fools family and friends because
the woman seems perfectly healthy. Because she looks so good, she may have
difficulty enlisting understanding and support from others. Sjogrens patients
often feel demoralized and guilty that they cannot continue at their previous
level of energy and activity. They may feel they have lost control over their
body. These women need validation and support in accepting their limitations
and will benefit from a support group.
 By the way, April is National Sjogrens Awareness Month. Do what you can to
help others become aware! :-)

Judi Lauwers