New member seeking advice!

[pmod2009]

Hello, I wanted to introduce myself and seek advice from people who really know whats what with this ?wonderful? condition!
Firstly, a bit of background on me, Im 28 years old and live in a fairly rural community in Europe. As you can imagine, Sjogrens is not exactly well known or recognised here. Even my family doctor asked me to explain it to him when I told him I had been diagnosed! Reassuring!
Since being diagnosed a year ago I have seen a range of specialists and received different information and advice from many of them.
I have thankfully been spared- so far & fingers crossed- the dry symptoms- dry eyes, mouth etc. My main complaints are joint pain, fatigue (extreme), chest pain (pleurisy) and skin problems. I also have a lot of GI problems, although my doctors tell me that may be due to the medication I?m on (I take steroids and imuran) as much as the SJS although I don?t know, I?ve had them long before I was diagnosed. My rheumatologist has said that I may also have SLE, its in my family but as they treat me the same and my lupus blood tests are negative at the moment, they are not chasing it down. 
Anyway, my main question right now (among many!) is to do with pregnancy. My docs seem to vary from telling me its fine to warning me its very risky. I know they all have their own agenda, like some want to keep me on meds etc. I know there?s an increased risk of heart problems and neonatal lupus, but sorry if this sounds stupid, Im just wondering how serious these are? Can the heart problem be cured relatively easily with surgery or would it cause life-long problems for a child? I also know that pregnancy for lupus patients is considered risky, is this the case for us also? It does not seem to be, but especially my Fiance is concerned about risks both for me and our baby- theres a lot of scary literature out there which is sometimes hard to get through. Right now Im on imuran so pregnancy is not an issue but its good to know about these things for future planning. Does anyone have any personal experience on pregnancy and SJS that they can share to advise me? Even on problems? Thanks

[Scottietottie]

Hi pmod 

Welcome to Sjogren's world.

I'm not medical but I believe I have read that if you have SjS there is a bigger risk of the baby developing something called fetal heart block. So saying - a lot of people in here have successfully had families (because it took years for a dx) and their kids have been fine. I think it is a case of the gynaecologist being aware of Sjogren's and that problems can be related to it and so the ante natal care has to be good.

There isn't a reason not to have family.

Take care - Scottie 

[tomsmom]

Hi!
I don't have dryness issues either.  Most of my symptoms are Lupus-like.  Pregnancy is somthing I go back and forth on.  I have two little boys now and part of me would love to try for a little girl but I worry about my health.  I wonder if pregnancy would make things worse for me.  My best advice to you is to consult all your doctors and make the best decision based on all their information.  Also, make sure you'll be living somewhere doctors are knowledgeable about prenatal care for women with autoimmune disorders.  Some women with Lupus and Sjogrens can absolutely have healthy pregnancies and babies.  Your baby could develop heart block if you carry certain antibodies.  I carry SS-B, not SS-A and  neither of my kids was born with heart block.   Take care! 

[pmod2009]

Thanks so much for both of your replies!
Its great to hear some positive feedback. Also good to hear from someone else who has no dryness issues- everytime i go to a dr they always are surprised that I dont!
I have both SSA and SSB antibodies, unfortunately

[Bucky]

Hi pmod,

Welcome.  I hope you will find lots of helpful information here on the forum.  If you put the word pregnancy in the search box in the top left it will take you to previous posts about pregnancy. 

Take care,
Bucky

[lynnmarie219]

Hi pmod and welcome to Sjogrens world!

I don't have a lot to add on pregnancy as I think the most important thing has been mentioned here....to make sure you have a doctor who is in tune with autoimmune disorders. There are many people on this board who have had successful pregnancies after being diagnosed with sjogrens and hopefully they will come by and add some more!

Until then...feel free to read all that can and want to here.....and enjoy the support and friendship here as well....its a wonderful feeling to know you re not alone in this and that there are others here who understand and can help answer any question you may have!

Welcome to the family!

[Patze]

Hi pmod,

Let me also welcome you to the SJS World!  Please do look around and check us out, as you'll find a ton of topics that you just might be interested in reading.

I also can't speak of pregnancy and SJS, and as Lynnmarie said, there are others that have gone down that road and have done it successfully. 

Again, welcome and hope to chat with you soon!

Take care -

Patze

[Pisces24]

I live in a somewhat big city in Iowa and doctors around here were evidentially unfamiliar with Sjogrens too as it took 6 year for them to diagnose me.  Now like most here, I am collecting -ologists.

Us with SJS all are affected differently. The symptoms you have may not be the ones your children have. We all have stuff (some we know about and some we don't) that will get passed down to our children. As long as you have a good doctor who is monitoring you and knows about the health history,  things should be ok. Depending on the doctor, you might have to be proactive (ie pushy) to get answers, etc but any baby dr should be used to that.
Good Luck.

BTW: I had blond hair up until I was 3 years old and then it turned dark brown and stayed.  While I am definitely my mom and dad's kid, we've not found a blond in the family tree yet.