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Hi. I am a 25 yr old female recently diagnosed with Sjogrens, primary. I have never been pregnant but would one day like to. I was wondering what the complications to pregnancy were for Sjogren's patients aside from heatblock (I am negative for those antibodies). Also, for my dry mouth I am considering taking Salagen or Exovac but am worried about the risks of infertility. Any information would be gladly appreciated. Thank you.

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Hi littlekimbones,

I too have Sjögrens (i'm 30 now) and am pregnant now. I am not an expert but have read lots and have good doctors, and from what i understand, as long as your antibodies are negative then you don't have risks for heartblock or neonatal lupus.
However, i am not so sure about the risks associated with the meds- do a lot of reading on them on your own- sometimes doctor's aren't as thorough on the long-term effects of these things (it's not THEIR body they are reading about, if you know what i mean), so do your own research and make your own decisions on this stuff. Ask your docs and if you do not feel they are knowledgeable enough, find others who are.
I would be very careful taking meds like that leading up to, and while pregnant- perhaps dealing with the mouth symptoms for a period of time would be preferrable to any risks to your fertility or a fetus...
Also remember- many women with auto-immune related stuff feel much BETTER during pregnancy (at least in the 2nd/3rd trimesters) with more energy and reduced symptoms, so it may be an enjoyable time even without meds :-)
Good luck!!!
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Though I absolutely agree that you should check with your doctors about your concerns about pregnancy I couldn't disagree more about the aches and pains.

I have 3 children. I was diagnosed with Sjogrens before my 3rd child, who was a surprise, at 31 years of age. My aches and pains were unbearable. The so called "normal" back pain was the worse for me. It wasn't like my first 2 children I could feel it in the bones and joints of my lower back and spine and it took days of staying off my feet to recover which was hard for me for I had 2 older kids to take care of.

If this happens to you during pregnancy check with your OB about taking ibuprofen to relieve some of the pain. I happen to be highly allergic to asprin and ibuprofen so my only option would be taking a low dose of steroids which I decided to take after the birth of my child.

Because of the unusual pain I couldn't wait for her birth. Today she's almost 9 months old and my joint "flare-ups" have increased dramatically. My husband and I are seriously considering a more permanent form of birth control. As far as we know we can continue having children but I'm not willing to increase Sjogrens any more than it has to with another pregnancy. I'm no good to my children if I'm too weak to take care of them.

So far things haven't been bad but I still have to be careful. I'm taking 1000 mg of MSM and 1500 mg of Glucosamine twice daily to help alleviate joint pain and take the steroid only when I have "flare-ups". Hydration is very important along with moderate exercise.

I'm not trying to discourage you from having children I just wanted to share my experience so that you are aware. Good Luck and Happy Holiday!
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Guest- thank you for your reply!
I had read about women who got major relief from their auto-immune disorders during pregnancy and had hoped i'd be one of them...but
I was unfortunately also not!
I'm now 32 weeks and have had really bad pelvic/back pain as well- i have to use crutches to get around sometimes and have major problems sleeping.
I wonder if that really is a connection to the Sjögrens? We have a name for it here in Norway- bekkenløsning, and they are not sure why some women get it while most are perfectly ok. They attribute it to the hormone relaxin which we know relaxes the joints in the body, but my physiotherapist also wondered if the reason i have so much pain from it could be connected to the Sjögrens. Interesting that you also suffered from this...did you not go back to "normal" after the birth? Or do you still suffer from the pain in your back/pelvis?
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I too have Sjogren's. I've was diagnosed with it when I was 22. I'm 27 now. I thought about the same things you're thinking of now. I have a beautiful daughter who is almost two with no defects at all. I also carried her to full term. I don't take any meds for my condition. I just deal with it hardcore. Taking the meds can cause your body to stop producing the moisture on its own and you might end up depending on it for the rest of your life. However for the dry mouth I chew gum and keep liquids close at hand. I hope this was helpful.
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I was 28 when first diagnosed with Sjogrens and last year, we had our first child. Although i didn't have any major symptoms of the condition (sever aches and pains, etc), I was fortunate to "stumble" across the diagnosis during routine dr's visit.

Knowing that I was positive for the condition, the rheumatologist told me that if I were to have a baby in the future it could affect the baby's heart. so when we got pregnant last year, my OB listened carefully to baby's heartbeat at every visit. At around my 5th month, she started to hear blockage so we were sent to the the specialist. Baby's heartbeats dropped to about 50 (average 110-150/160 ish?) so I was immediately put on steroids until the end of the pregnancy which were to assist in the preventing any further heart blockage. To everyone's surprise, by the time the baby was full term, there were NO signs of blockage at all! In the delivery room, we had a cardiac team waiting to examine him as he was delivered. Last week, we went to the Pediatric Cardiologist to verify everything was still fine with our little guy and he was again, amazed to see our little piglet was "perfect".

We have been told that there is not much direct research on this topic b/c the cases are rare. The specialist we saw bi-weekly for the last 5 months of the pregnancy said we were the first "completely successful" case they'd treated where the fetus was delivered with absolutely no heart complications. We feel very fortunate. It was tough to be on the steroids for such a long time. It's brutal on your body and all the side affects are tough. But it sure was worth it to get a healthy little guy out of it.

Today, we're 13 weeks preggers again. We're crossing our fingers and praying that this one will go as well.

Good luck to you all.
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May I ask which steroids your doctor prescribed and in what dosage? Was it prednisone? dexamethasone?



I'm 5 weeks pregnant, 38 yrs. old, and I was diagnosed with Sjogren's last year. I'm currently taking 10 mg prednisone twice a day, but I've read that dexamethasone might be preferable for pregnant women with Sjogren's because it crosses the placenta.
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I was 28 when I had my son. I was diagnosed with Sjorgen's prior to getting pregnant. During my pregnancy I was instructed to take a baby aspirin daily. I was watched closely and also was sent around 20 weeks for an echocardiogram of the baby's heart. He was born healthy at nearly 10 lbs. I have not noticed increased symptoms since my pregnancy. I actually rarely have any symptom's however my bloodwork shows positive for the anti-body. I am now trying to conceive again and having some difficulty but don't think it is due to the sjorgen's. Probably because I am older and more stress.
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hi
i m 28 years old with sjognens syndrome and Ro&La positive.n have had a miscarriage n year back at that time the featus was 9weeks 6 days old.this year i again concieved but the featus was diagonised with complete heart block at the age of 5 weeks . i was pot on bet methsol after this was diagonised, n we didnt want to take any chances so terminated the pregnancy.it would be helpful for me if i could know the steriods u were on or atleast the composition.
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Where you able to have a normal delivery or did they have to do a c-section?
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