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fields of gold
New Member

Date Joined Aug 2009
Total Posts : 5
   Posted 8/12/2009 4:56 PM (GMT -6)   
Back in 2005 I was pregnant with my first and around 6months she developed a compleat heart block. The docters suspected lupus and ran some tests, they told me that the results came back 50/50. If I had lupus it was still inactive and they would have to wait untill I developed simptoms. Months later I started feeling off, it started with joint pain from my toes to my fingers so I had trouble even opening the painreleaver. The docters never told me what lupus was, so it wasent untill I woke up so dizy I couldent stand that I went to the hospital. They gave me multiple pills to take and sent me home. I spent the next fue weeks just sleeping. After looking lupus up on the internet I tryed to talk to my docter abought it. She told me if it happened a 2ed time to talk to her then. I live in a small town and finding a better docter has proved frutless. It's been 4 years since then and nothings happened but, having become pregnant with my 2ed child and unable to get information from my new docter (who I've also tryed to talk to), any advice would be welcome. Thanks.

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 8/13/2009 1:51 PM (GMT -6)   
Dear Fields of Gold, (you didn't sign your real name),
First of all, are you still experiencing any symptoms, you said that nothing has happened since 4 years ago or are you just trying to prepare yourself during this pregnancy of having another possible lupus flare.  After treatment the first time how long did your symptoms last before they disappeared.  If you still have them, you really need to see a rheumatologist to get the accurate blood work done to pinpoint if it's lupus or another possible auto-immune disorder.  Not sure what your insurance plan is like but many require your general practitioner to refer you to a rheumatologist and if so, I would ask your doctor to do so immediately because it can take awhile to get in to seeing one.  They would be able to rule out anything significant or at least monitor you periodically for signs of the disease.  If you haven't had any symptoms maybe it was possible you had something viral attack you at that time as well.  I hope you get this figured out.  Don't want to see you go through a risky pregnancy because one doctor doesn't listen to you.  Be forceful when it comes to your health and your baby's health.  Keep us posted.
Your southern diva,
DX - lupus and carpal tunnel syndrome
RX - plaquenil, prednisone, folic acid, lisiniprol, anti-inflammatories, fish oil and flax seed oil, and vitamins

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 8/13/2009 5:51 PM (GMT -6)   
I agree with Lynette that if you suspect you might have Lupus you need to see a rheumatologist.  Until you know what you're dealing with it's hard to give too much advice.  You're on meds that treat Lupus and if you're not experiencing any symptoms that is a good thing.  Pregnancy and Lupus can be very complex so make sure you find out everything.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums

Regular Member

Date Joined Oct 2005
Total Posts : 130
   Posted 8/14/2009 4:30 AM (GMT -6)   
I am sorry to hear about your daughter's heart block. It seems to me that you might have the anti-Ro (SS-A) antibodies which can cross the placenta to cause what's called neonatal lupus. The baby doesn't have lupus but can have some lupus like skin problems, or some blood abnormalities and sometimes liver abnormalities which aren't permanent & disappear when the antibodies leave the baby's system usually within a few months. Neonatal lupus is rare. The one permanent effect is heart block which is even rarer.

about one third of those with lupus have these antibodies and they are a diagnostic criterion for Sjogren's disease. I see you were diagnosed with Sjogren's in your teens. The other significant antibodies associated with Sjogren's are called anti-La (SS-B). From what I have read the presence of both these antibodies is more likely to cause neonatal lupus.

The statistics are that when the first child has heart block caused by neonatal lupus the second child has a 25% greater chance of also suffering from it. So I hope you can get expert high risk care. Very regular fetal echocardiograms starting in the 16th week should detect heart problems so arrangements made for the baby's care as soon as it is born. I don't think there is as yet any treatment possible before birth.

Mothers with these antibodies might be perfectly well even when their baby is affected by the antibodies although they are at a higher risk of developing some lupus related connective tissue disease along the line. There doesn't seem to be any evidence that the babies themselves are any more likely to develop SLE or something similar.

It is very possible that your doctors know nothing about neonatal lupus as it is very specialised area. They should be willing to learn though ! And do their best for the baby and you

I hope all goes well this time and wish you lots of luck and good doctoring.


Post Edited (BumbleBee1) : 8/14/2009 11:03:44 AM (GMT-6)

fields of gold
New Member

Date Joined Aug 2009
Total Posts : 5
   Posted 8/19/2009 4:06 PM (GMT -6)   
Thanks, I wish my information was better but, that's all I've been told. My curent docter is going to be getting ahold of someone at the women and children's hospital of buffalo somtime this month. I'm not hopefull that I'll be geting any usefull info. since it's the same one that I talked to last time. The hardest part is trying to make sound choices when I feel like I don't have the info. I need. I'll be talking to my docter soon, thanks for what information you could give.
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