Greetings fellow Lactnetters,

This is my first post on Lactnet.  I have been lurking on Lactnet for two
years now and have learned a great deal from all of you.   I wanted to briefly
introduce myself.  My name is Brigitte Hall.  I am a hospital based RN since
1979, CLE (1993), and  lactation consultant (IBCLC, 1997).  I have worked in
maternal child health the last 16 years (mostly NICU).  I am an American
currently living in Okinawa, Japan with my air force neonatologist husband and
our three breastfed children (Alyssa, 14 yrs; Jason, 10 yrs; Richard, 6 yrs).
I am the sole lactation consultant on island seeing all the inpatients and
outpatients at the U.S. military hospital (100 births/month).  I also teach
breastfeeding classes to expectant parents and give lectures to the medical
and nursing staff.  I am the island "breastfeeding expert" so to speak.

I am a little behind on my posts, but I wanted to respond to Debi Ciccarello's
post from 7/2 regarding the mom recently diagnosed with lupus.  I wanted to
share my personal experience of breastfeeding and having lupus and explore the
medication options with all of you.

I became ill with lupus when I was 9 months postpartum with my 3rd child.
Like the mother described by Debi, my 9 month old was eating some solids but
his primary diet was also still breastmilk. I had breastfed my other two
children long-term, and I had no intentions of weaning Richard prematurely.
When my doctor recommended that I start taking high dose non-steroidal anti-
inflammatory drug (NSAID), he prescribed enteric-coated Aspirin.  I told him I
couldn't take the medication because I was breastfeeding.  I thought that I
could just endure the pain (afterall, I could endure natural childbirth of a 9
lb baby), but unlike childbirth, the pain persisted day after day.  I was
upset to learn that to achieve the anti-inflammatory affect of a non-
steroidal, the dose had to be high arthritic dosages.  Of course there were
concerns about taking high dosages of ASA (aspirin) while breastfeeding, but
this doctor was not a specialist, and he didn't offer me any other options.
Two months later when I finally got the next available appointment with a
rheumatologist, the rheumatologist informed me there were many NSAID's to
choose from.  By then I had already weaned my son and taken the ASA.  The pain
was unbearable, I felt achy every day, and I was profoundly weak and tired.  I
was angry that I didn't know there were other drug choices, but I still had
concerns about the safety of high dosages of the other NSAID's and
breastfeeding.  I switched to Ibuprofen 800 mg three times a day.  I was told
by my rheumatologist that after my arthralgias were under control, then later
I could cut my dose down to twice a day--took months for me.  Although Motrin
is AAP approved for breastfeeding, my understanding is that there is concern
for dosages in the high range for long-term.  At least that was my
understanding.  Besides clotting time being affected, there is potential
concern for kidney damage.  I am not sure if these are still concerns for the
baby (Dr. Tom, Dr. Frank, anyone else?), but they are for the mother.

Two years ago I was also started on Plaquenil 200 mg twice a day.  (BTW, I
have annual eye exams.)   After 5 ½ years of disease, after trying several
non-steroidals (only one at a time-- enteric coated Aspirin, Naprosyn,
Indomethacin), I am back to Ibuprofen 800 mg twice a day now along with
Plaquenil.   My  quality of life is pretty good now, but I have strong guilt
feelings about abruptly weaning my baby at 9 ½ months of age.  I hated using
ABM.  I personally regret weaning the way I did.  If I knew what I know now, I
might have pushed my son to take more solids and nurse less and wean more
slowly.  I never counted how often he nursed, but probably 8-12 times a day
(frequently through the night as he slept with us).  Abrupt weaning was very
traumatic for both of us.  I think I will always wonder if weaning was truly
indicated.

Other suggestions to help this mother through this difficult time would
include referring her to the Lupus Foundation of America (LFA), 4 Research
Plaza, Suite 180, Rockville, MD  (USA)  20850-3226 or call (800) 558-0121.
They can also tell her if there is a local chapter in her area that offers a
support group and provides educational information for lay people.  There are
several other lupus support organizations as well.  You may e-mail me
privately if you want that information.  Another thing I did after I got
through the initial shock and denial of the disease was visit a good bookstore
and bought up-to-date books on lupus.  Most paperback books on lupus in the
U.S. sell for about $10-$15.  She can also visit her local library or check on
the internet.

I look forward to meeting some of you at the ILCA conference.

Brigitte Hall, RNC, IBCLC
Okinawa, Japan