Sjogren's Syndrome And Pregnacy....

A certain blood marker often found in women with Sjogren's syndrome can, very rarely, be associated with heart problems in newborn babies. If you're a woman with Sjogren's syndrome who is planning to become pregnant, see your doctor about testing for this marker. If it is present, ask your doctor whether pregnancy is advisable. If you do become pregnant, you and your doctor can work out the best plan to manage the situation.
The above is informaztion from another website hope it helps.
I myself have CREST Scleroderma & have some sympotoms of Sjogrens (dry eyes & mouth). Hope you get a diagnosis soon.

My son was found to have congenital heart block while I was pregnant. That is how I found out I had Sjogren's. Because it was complete heart block, no meds could help him. So he needed a pacemaker when he was born. I since tried to get pregnant again, and I miscarried at 14 weeks. I just saw something about particles in the amniotic fluid and I am looking into that incase I want to try one more time. But there are many different side effects to the baby's heart that can occur, but do not always occur.

I hope that helped.

My daughter was born with Complete congenital heart block and was born at 29 weeks. She requires a pacemaker but is coping fine on her own at the moment. I never knew I had anti/ro antibodies until I had to give birth to my daughter due to her slow heart rate as my first pregnancy was perfect. They are still in the process of testing me for Primary Sjogrens. I do not think it affects the amniotic fluid as women with sjogrens tend to have specific antibodies, ie anti/ro and they attack the babies heart, although not in all cases. If you seek advice from the medical specialists there are things they can do to counteract such antibodies coming to light. I hope this helps

What affects does pregnancy have on the mother with sjogren's. Does it advance it so the speak or make it flare up during the pregnancy. And someone told me that if your first child is born with out a heart block the percentage of having a heart block in the second child is rare and goes down by 30%. Anyone know the truth to this?

i wsa diagnosed with sjogren's syndrome right after giving birth to my first child, he has 5 years old & i want to get pregnant again , my doctor advised that t wont be easy , & told me about the possible congenital heart disease for my new born, am really confused is it worth the risk to repeat it all over especially that i had a lot of problems during my first pregnancy , or should i listen to the doctor & enough with one chuld ?
will appreciate any reply

N.b

i had low amniotic fluid in my first pregnancy , am not sure if its because of the sjogrens syndrome or not

My daughter is 16 months old, and has no health problems at all. She was delivered at 37 weeks weighing in at 5lb9oz. I am 29 weeks pregnant with my 2nd and he has Complete Congenital Heart Block due to the antibodies. Please research the possible outcomes and long term care for your children. This has been a complicated pregnancy with lots of trips to specialist to make sure he is ok. I am already dilated to 1cm, but he weighs 2lb 12oz and currently his heart is beating at 72bpm vrate. Know that your child may or may not require a pacemaker based on how his body tolerates his heart condition; and also that at any time he could develop hydrops or fluid that would cause them to deliver c-section. They cannot vaginaly deliver heart block babies because there is no way to monitor them in the labor process, therefore always surgery in your future as well.

New here and also a fellow Sjoggie...I am ANA positive but so far baby's heart has been behaving normally until my last u/s when it slowed by 20 points. I'm currently 29 weeks and this is my 3rd pregnancy and my other 2 munchkins are both healthy as can be. I was diagnosed when I was 7 weeks pregnant during my 2nd pregnancy and had weekly u/s's on her heart from 19 weeks until 29 weeks then biweekly until 36 weeks. This time around I have been having weekly u/s's since 16 weeks and right now im in the middle of a 3 week break cause my peri doc is out of town. Of course I have the longest wait after they find a slight cause for concern on my last u/s. Baby is in a horrendous position though and she said that is most likely the cause of the drop because by this point, the block should have already started to happen if it was going to so she doesn't really think that's what is going on. So anybody find the baby developed a block AFTER 27 weeks? My doc said it would most likely have started by 22 and most certainly by 26 and at my 26 week visit baby boy was just fine (and also in a much better position).

My other question is regarding flairs. I've never had a so-called flair that caused any glands to swell but I'm all of a sudden starting to feel like an old crippled arthritic person. My fingers have all gotten so stiff I can barely bend them and first thing in the morning I have zero grip strength. My right knee will not bear weight so that leaves me trying to stand up on my left leg only and I've gained 60 lbs and this is not an easy task. My knee is starting to swell a bit too but I haven't injured it that I'm aware of. My feet are also both becoming very painful to walk on. Burning a lot of the time but walking they feel extremely bruised. Plus I'm exhausted all the time and its all really wearing on me and now I'm dealing with depression too. Could I be having a flair and its just affecting my joints? My mouth and eyes are dry all the time anyway so I haven't noticed much difference in that area. Oh and I'm itching like mad all over. Anybody dealt with any of this during pregnancy??? I don't know whether it could be a flair or if (god forbid) there is something else going on. Thanks for any responses!!!
Michelle

Hi Michelle
I haven't heard of any of those symptoms as being related to sjogrens... other than the dry eyes and moth, of course. It all sounds related to the toll pregnancy causes on your body, but you should probably tell you high risk OBGYN if you haven't already. I am SS-A, SS-B positive and have one healthy 2 year old daughter. I am thinking of becoming pregnant with a second child, and I read your post and found it interesting.I am extremely nervous about a second baby having a possible CHB. Is there anything you did to minimize your risk? I am so nervous about a second pregnancy, but I desperately want another child, and I am really trying to just put it in Gods hands.

Any advice would be much appreciated

Michele

I have Ss....and find the post below by Michelle 's odd....ABSOLUTELY are joints included in SS. That was what sent me ...and fatigue.... to the doctor for my positive diagnosis.

I have Ss....and find the post above by Michelle 's odd....ABSOLUTELY are joints included in SS. That was what sent me ...and fatigue.... to the doctor for my positive diagnosis.

Hello, I'm new here. I've been researching about pregnancy and sjogrens syndrome. I was diagnosed 2 years ago and have been treated with plaquenil. I had a miscarriage over a year and I am 15 weeks pregnant now. My first pregnancy did not have any complications and I have a beautiful 4 year old boy who is healthy. With this new pregnancy I have been very nervous since I already has a MC. My Obgyn told me to stop taking the plaquenil as soon as I found out I was pregnant, wich I did. My Rheumatologyst has told me about fetal heart block so in my last appointment at 12 weeks, I asked the nurse practitioner about heart block and her answer was that they were going to monitor me as all other patients. She said that there is nothing they can do if the baby has a heart block. She said they can't really do anything until the baby is over 20 something weeks and that's when the baby can live outside the womb. Does this sound stupid to you? I feel like they are not taking this seriously. I've asked about going to a high risk doctor and Obgyn says she doesn't think I should but she would refer me if she thinks there is risk. What should I do? I do not want to lose another baby. I'm so scared. What do you guys think? Thank you and I wish all of you well. Chris.

I am new to this too.. I am 5 weeks pregnant and I have positive antibodies. My son is 2 years old and he had neonatal lupus just skin lupus. He is fine now and very healthy. The doctor told me to stay on my imuran so I don't have a flare up ,But I am so scared about the CHB and the imuran to. Imuran can cause so many birth defects but the doctor tells me to stay on it. I am so scared and confused I just want a healthy baby!! Anybody else going through this or has been through this before?

if u have the positive antibodies that cause heart block they should send u to a maternal fetal specialist. and u will have weekly echo done from 18 to 28 weeks... im currently 30 weeks & had the antibodies. this has been a hard pregnancy. I have 2 children my oldest 10 had no issues with him.. after my daugther who is 4 was born i had a horrible time both during and after & a few months after her birth was diagnosed finally with sjnogrens as well as RA & SLE. this pregnancy was a major oops. i had to have my merana removed (was placed when i was on methotrexate injections) because it had caused serious issues after 2 years.anyway. this pregnancy has beeen so hard. i was soo sick and hospitalized multiple times in the first trimester and parts of the 2nd. then started to do well at 23 weeks i went into premature labor and have been on bedrest since. my babys heart is fine. no heartblock. most babies if monitored and caught in the begining of block can be helped with a steroid treatment that will cross over to help the fetus.. i was freaking out after i was told at 10 weeks i had the antibodies.. i have drs here in my town both OBGYN rhuematogoist internist endocrinologist. plus the maternal fetal specialist about an hour away and the U of M doctors also... so far so good. i feel like goin to the dr is a full time job. i go to the ob every week still one week is a normal visit the next is an ultrasound ect, you need to educate yourself and talk to your team of drs your OB YOUR RHUEMATOLOGIST... ect..

if u have the positive antibodies that cause heart block they should send u to a maternal fetal specialist. and u will have weekly echo done from 18 to 28 weeks... im currently 30 weeks & had the antibodies. this has been a hard pregnancy. I have 2 children both born very healthy.. my oldest 10 had no issues with him.. after my daugther who is 4 was born i had a horrible time both during and after & a few months after her birth was diagnosed finally with sjnogrens as well as RA & SLE. this pregnancy was a major oops. i had to have my merana removed (was placed when i was on methotrexate injections) because it had caused serious issues after 2 years.anyway. this pregnancy has beeen so hard. i was soo sick and hospitalized multiple times in the first trimester and parts of the 2nd. then started to do well at 23 weeks i went into premature labor and have been on bedrest since. my babys heart is fine. no heartblock. most babies if monitored and caught in the begining of block can be helped with a steroid treatment that will cross over to help the fetus.. i was freaking out after i was told at 10 weeks i had the antibodies.. i have drs here in my town both OBGYN rhuematogoist internist endocrinologist. plus the maternal fetal specialist about an hour away and the U of M doctors also... so far so good. i feel like goin to the dr is a full time job. i go to the ob every week still one week is a normal visit the next is an ultrasound ect, you need to educate yourself and talk to your team of drs your OB YOUR RHUEMATOLOGIST... ect..

I was diagnosed with Sjogren 2 years ago- i have positive SSA. i don't have dry eyes and dry mouth. I have numbness in my left cheek. I just found out I am 5 weeks pregnant.. and so scared my baby might have a heartblock. I have my appointment with the high risk doctor in 2 months. Should I go earlier for them to monitor the baby's heart asap?

They won't do any monitoring til 18 weeks. Heartblok usually begins at that time. I worried to. Did u get tesed for the antibodies that cause it? Not everyone that has I hasbabies with heartblock. They have steps to treat beforebirth that is why they monitor. I'm still monitored by my regular OBGYN heart rate & an ultrasound. But don't need the maternal fetal ultrasounds & echo's after 2 weeks. U r still in your first 12 weeks. I have 2 living children but have had 3 miscarriages! This is my 6th pregancy. Just try & get through the 1st 12 weeks before worryin about heartblock. Wish u health & happiness.

I am 36 week with a healthy baby girl who is actually in the 8481% percentile for size. I have had a pretty severe case of jsogrenswcause with a severe flare up last June. So severe they thought I had lymphoma. My biggest recommendation is supplements. Doctors are not going to recommend much other than Prenatal vitamins but there is much more that your body needs. I would visit Charles Polliquins website and read his articles on Pregnancy and what supplements are beneficial.
good luck.

I am 36 week with a healthy baby girl who is actually in the 8481% percentile for size. I have had a pretty severe case of jsogrenswcause with a severe flare up last June. So severe they thought I had lymphoma. My biggest recommendation is supplements. Doctors are not going to recommend much other than Prenatal vitamins but there is much more that your body needs. I would visit Charles Polliquins website and read his articles on Pregnancy and what supplements are beneficial.
good luck.

thank you autoimmune mom. This has been helpful. i have not tested for the antibodies that has caused it.. I don't have the primary sympton of sjrogren - no dryness of the eyes and mouth.. i have numbness in my left cheek- no pain just tingling feeling. My rheumatologist said I have positive SSA antibodies-for sjrogren. I am not on medication and rheumatologist kept on sending me to another rheumatologist to get an second opinion. I am going this Monday to see another rheumatologist and i will ask to get tested for antibodies that causes the heart block. I just got done with my ultrasound and saw the baby's heartbeat..so exciting.. good luck with your pregnancy.

U should inform your OBGYN that u may have sjnogrens. They will prolly want t monitor u closer

i am 37 weeks pregnant and just found out a week before i confirmed this pregnancy i had sjogrens. I was also tested with the ss strain. After delivering a healthy baby girl last aug, i was exhausted which caused me to continuously visit my doctor. after several test they confirmed i had sjogrens. i have been blessed thus far with a good healthy pregnancy. Not only do i often see my OB but have follow ups with the high risk dr and Rheumatologist who have all educated on the possibilities of heart blockage which can be identified going into the 2nd trimester. the continued ultrasounds have brough peace of mind and the high risk dr has said if any issues were to arise, they would send me to heart specialist for additional care and possible options that may be available (such as streriods) to reverse the blockage if identified. Not all dr support the option of taking steriods as they dont think its effective - thank goodness we were not put in a situation to test that. We go in monday to deliver early since the dr thinks its best since he's 100% healthy. I wish all of you the best of luck - ask LOTS of questions and know that if you do have the ss strain, it doesnt mean your child/children will develop heart problems as both of ours didnt, sending our prayers.

PS... fatigue, pain, dryness, joint pain are all symptoms of Sjogrens but try to stay active, take vitamins and eat health to minimize the inflammation sjogrens causes on the body - best wishes