Hello everybody,
This is my first posting in this forum, so excuse me for coming to the point so directly... ::) The reason I am writing is that I am currently quite confused and I hope that someone here might share her experiences with me!
I was diagnosed primary SjS a couple of years ago, both SS-A and SS-B positive. I am now fourth month pregnant with my first child and so far he/she grows and feels well (thank god) and I am doing fine, too.
BUT I am having a very hard time getting the proper supervision and care for the baby's risk of developing heart issues. Although I know that fortunately the risk is low, it still needs to be supervised and there seem to be extremely few medical professionals who have the skill to do this (or even who know of SjS and the issues which accompany it in pregnancy >:()
Anyhow, recently the questions was brought up by one of my doctors of treating me with cortisone to counter the risk of heart block in the baby but I am very unsure about this since cortisone poses some dangers to the baby, too.
My question to you therefore is: What were your experiences as a pregnant SjS patient? What kind of supervision and treatment did you get? Did you have to take cortisone during pregnancy (in advance or only after any heart problems were detected)?
Thank you very much in advance for all kind of help and advice that you can share!
Hi Mansor, and welcome.
Congratulations to you and this new life you are carrying.
I was just diagnosed a few years ago, so when I was pregnant, the troubles I had were not explained by having sjogrens.
But my complications were kidney trouble and pre eclampsia. I had terrible edema and dangerously high blood pressure. Bleeding gums and sinus issues. I look back and realize it was because of the sjogrens I am sure. The only treatment I got was forced bed rest, early hospitalization and water pills for the kidney/ blood pressure issue. My daughter was born two weeks early, tiny snd perfect.
I know this is not much help to you, hopefully someone will come along with better answers regarding the cortisone
I wish you all the best with your pregnancy
Welcome to the forum, Mansor.
Here are some links that I hope will help you out.
Pediatric cardiology consultation is necessary for every case.:
http://emedicine.medscape.com/article/894703-workup
Treatment:
http://emedicine.medscape.com/article/894703-treatment
Medications:
http://emedicine.medscape.com/article/894703-medication
Corticosteroids:
http://emedicine.medscape.com/article/894703-medication#2
Blood Products:
http://emedicine.medscape.com/article/894703-medication#3
Our Journey With Congenital Complete Heart Block/NeoNatal Lupus:
http://simplyabsurd.com/NNLJourney.aspx
Congenital heart block associated with Sj?gren syndrome: case report:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2731088/
Predicting autoimmune congenital heart block: is it feasible and how?:
http://rheumatology.oxfordjournals.org/content/46/8/1221.full
Hi Mansor,
Congrats on the baby!
I experienced the same lack of knowledge by my doctors as to the risks as well, so I know what you mean. I was not deemed high-risk in my first pregnancy but in my second pregnancy my rheumatolgst (not obgyn) stepped in and referred me to a high-risk group. They knew exactly what to do. I was monitored for CHB, preterm labor and preeclampsia. I didn't have any of those, but I did end up with a rare liver disease probably as a result of the Sjogren's. So my point is, the extra observation is necessary.
As far as the CHB, I had an ultrasound around 20-22 weeks(?) in which they did an echocardiogram of the baby's heart. They were able to pretty much rule it out at that point, although they continued to monitor me for other complications. Based on that, I have to think you are probably too far along to 'prevent' it if that were even possible...but I am not a doctor. :-)
I hope hearing about my experience helps. Try not to worry - most likely your baby will be completely unaffected by your illness.
Suzy
Hi,
I just did this..... My baby is a happy, healthy 10 month old. Have you seen a pediatric cardiologist? They should be doing ultrasounds on you once a month. If they want to steroids then take their advice. But you should have your ob and ped. Cardiologist discuss it with you.
I was only on steroids during delivery. Try not to stress too much, it will be ok.
Hooty
Hello all,
Thank you very much everybody for your kind and supporting answers :D Thank you, Lighthouse 33, for the useful links, too. I will surely read them all later that day when I will have some more time. I am also sorry to learn that some of you had health problems during their pregnancy... But good to know that your kids are all right ;)
If anybody has personal experiences with cortisone therapy during pregnancy I will be very happy to read about it! So far, thanks a lot again and have a splendid day!
Congratulations on your baby.
I'm 33 and currently 3 months pregnant with my third child. I wasn't deemed high risk with my first son (he's 7 now) and he has no heart issues.
My 2nd son didn't have heart block either. At the time of my second pregnancy (5 years ago) I had only been diagnosed with Graves disease so I was watched a bit closer but not deemed high risk.
Now, at the time of my 3rd pregnancy I am considered high risk as I have hypertension, Grave's Disease, Sjogren's and Myasthenia Gravis. I see a high risk obgyn, a perinatologist, and my rheumy and neuro.
The perinatologist says it's fine for me to remain on plaquenil and my other meds and says that after my initial appt with him at 6 weeks, that he wanted to see me again at 18 weeks where he'll want to do a more complex ultrasound of the baby.
He said when I'm several weeks farther than that he wants to send me to see a pediatric cardiologist who'll look at the baby's heart and determine if a pacemaker is needed.
I'm praying not.
No one will ok me to go on cortisone therapy long term due to my preexisting hypertension. I asked about taking medrol. I was told that low dose steroid treatment was ok during pregnancy -- for those who can tolerate it but since I have bp issues-- it's a no for me.
How are you feeling? So far this pregnancy seems to be the hardest for me. I'm worn out.
@tomsmom
Hello, and thank you, too, for your reply. I am sorry that you have so much trouble with this pregnancy. Fortunately, I feel very well and I also don't seem to have any SjS related symptoms at the time being (it used to be worse before the onset of my pregnancy but that may be a coincidence).
I wish you all the best for you and your baby!!!
Mansor,
Just a thought, but if you are having trouble convincing your doc about being followed by high risk OB, maybe showing him some of the articles above that are pertinent would help. Just thinking. Glad your pregnancy is progressing ok.
Nancy
Hi mansor,
I'm new here too. I'm 29yo living w SS for approx 10yrs have positive ssa and ssb and am 32 weeks prego with my 3rd child. Early in my pregnancy my Ob stated my pregnancy was high risk due to ssa and ssb antibodies and referred me to my Perinatologist who has done an ultrasound on baby every week to check fetal heart rate and other test to make sure baby does not get heart block which till this day has not thank god. My rheumatologist and perinatologist suggested i continue taking my plaquenil throughout my pregnancy which i have. I also just received my first steroid injection because baby`s growth has stalled and perinatologist said it is so baby`s lungs will fully develop in case i have to deliver early. I hope you continue well through your pregnancy congratulations and take care.