"I cannot tell you what is best, but I can tell
you what I have been through. There were 4 people prego the same time as me at the office that also had lupus. I was the only
one that went through the whole time without any meds. Now I am not going to tell you it was easy, but I did it with my first
child and I wanted to do it with this one to. With my first child back in 97 I did fine right up until he was about 3 months
and then I had a real bad flare. At the request of the doctor he put me back on my meds plaq, an pred, and said no more breastfeeding.
I continued the meds off and on until I became prego and gave birth to a daughter in May of 04. Again I went med free and
have continued to do so until now. I had a bad flare again, I started taking tylenol, but it got to where I was taking 4 at
a time 5 to 6 times a day. After seeing a new rummy he suggested that I try ibuprofen 800 ml. I have been able to manage the
pain with that, and not harm the baby and continue to breastfeed her. I got down and out one time during the preg, and the
doctor said that I could go back on my meds that it would not hurt the baby, that the other girls in the office were doing
it, but I fought to make it to the end, and did. I know that there is lots that you can take, so work real close with both
the doctors and make sure that they work with you and have yours and the baby's best interest in mind...
I wanted to let you know what my doc said
today. He pulled out all of his books and just shook his head every 5 mins, but we finally agreed on something. He thinks
that right now I am just having a flare and the first thing we need to do it get it under control. Then towards the end of
my breastfeeding start fighting. He gave me a script for Prednisone that starts with 8 for 2 days and decreases to 1 for 2
weeks. He thinks that once I get it calmed down that the ibupofen 800 ml will help me manage until I am done with nursing...."
"I have one son, who was born two
years ago. I had a perfect pregnancy with him and he arrived two days after his due date. I was told to go off of all of my
medication while pregnant (I had been taking Plaquenil and Relafen and had taken Imuran beforehand). I was told that the Plaquenil
may cause birth defects.
After having him, my kidney function slowed and so
I got my tubes tied because another pregnancy most likely would've put me at the point where my kidneys would be so bad that
I would need dialysis.
Best of luck to you."
I am currently 32 weeks pregnant with my third child.
I have had two children since diagnosed with lupus.
There are finally new studies out in the United States
that support the use of placquenil during pregnancy AND breastfeeding! I am a patient at a large hospital group in San Francisco
and am monitored by two perinatologists, an ob/gyn and a rheumatologist. I take plaquenil WHILE pregnant. The fda is changing
plaquenil to a category b drug.
Also, Dr. Hale, a leading researcher in the field of
breast feeding and the safety of drugs taken during lacatation has recently completed his studies of remicade and enbrel and
their safety during breastfeeding. He deems both safe and this is supported by my doctors. Placquenil has already been approved.
You can look him up on the web but many peditricians use his studies.
This is a subject near and dear to my heart because
I suffered greatly during a pregnancy and breastfeeding of my daughter and it need not be. Some doctors are NOT up on their
meds and don't support breastfeeding much. You may have to dig for your answers. I live in a smaller community and the doctors
here did not know much about these meds and pregnancy and breastfeeding. You might want to ask your doctors to consult with
major medical centers nearby you (if you don't live in a larger city).
Prednisone is frequently prescribed but it can cause
pre-eclampsia. You and your doctor will have to weigh your own risk factors.
I did not take placquenil my first trimester and it
was rough. I had to start taking it again as I could not function. Luckily, new studies supported its safe use.
Good luck and encourage your doctors to do some research
on this matter."
" I took dexamethasone while I was pregnant
with my daughter. I didn't take it for a flare, thankfully I've never had anything that I required medicine at least past
motrin. However, my daughter had a complete heart block due to my Lupus.
Please make sure that when you do become pregnant that
your doctor looks at your labs and notes if you are positive for the markers for the antibodies that cause a heart block.
I saw a rhumy in June of 01 after my son was born (and dx with neonatal lupus syndrome, which is how we found out I have lupus.)
They did $1500 worth of blood work, I called and was told it was all "normal" but AFTER I found out I was pregnant with my
DD, my OB requested the labs and HE found the markers for the heart block. I had a normal visit at 17 weeks but at 20 weeks
when I had my Level 2 sono we found the heart block.
There is a 25% chance with any Lupus pregnancy that
the baby will develop neonatal lupus syndrome. My son had the dermatological symptoms but his heart and platelet formation
were normal. My daughter had mild skin reaction at about 3-6 weeks, but that went away much faster than my son's...but she
had the heart defect and reeeealllly low platelets for a good while.
She has a pacemaker now and is doing well. I took the
dexamethasone during the pregnancy for HER heart...it started to fail at 22 weeks and they thought we were going to lose her
but thankfully they were wrong! I took it until after she was born at 35 weeks, then tapered off.
I just lurk on this board and don't mean to scare anyone,
but PLEASE make sure your OB's follow up with the babies after they're born. Even if they don't have the heart defect they
can have other things."
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