Sjogren and pregnancy: Will the disease worsen after delivery?

[veleha]

Hello!

I guess there has been discussion about this subject before, but I need your advice as much as possible. I was diagnosed with Sjs two years ago. I have had very mild symptoms to this day, only mildly dry eyes and mildly dry mouth, nothing else. I was aware the risks of pregnancy, and was recommended hydroxychlorine by my rheumy to decrease the inflammation in my body. However, I was scared of the side-effects of the medication and besides I have many times considered starting it to avoid further problems, I didn't. I asked my rheumy, if I wanted to became pregnant, should I take the medication and he said it would be good to start medication some months before I planned to became pregnant. I still did not started it, but started trying to became pregnant - I thought it would take some time anyway, so I could probably start the medication. But after a months try, I am now pregnant, only 5 weeks still.

Now I am very scared, if my disease will significantly worsen after delivery. I know there can be even some improvement in symptoms during the pregnancy, and I am aware of the heart block risks of the fetus and all. My doctors told me I would be closely monitored and that if the disease will flare afterwards, put on the medication. But I am still wondering, how big risk there is that my nowadays very mild symptoms will turn to something much more serious after delivery. How common it is that the worsening of the symptoms after pregnancy is permanent and due to avoiding medication before, I would go on to have very much worse disease than before?

I have read that the newest research does not consider the hydroxichlorine is bad for the foetus, so I am thinking if I should start the medication now after I am already pregnant even that I know it would have been much better that I had started that before.  Any experiences? If the disease flares, how common it is, that it will return to it's pre-pregnancy form? My disease has never flared, I really have had this disease maybe 8 or even 10 or more years, and do only show these very mild symptoms. Of course I know, the disease can worsen over time even without pregnancy, but wondering how big risk I am actually taking getting pregnant without any medication?

[Nomad]

Since SS is often diagnosed in women after age 40, I don't suppose pregnancy comes up very often. I had lupus that was very active while pregnant. I was given prednisone and was told it would not cross the placenta.  I don't entirely believe this, as our son was born with the typical "moon face," folks get while on prednisone.  However, the prednisone, did help control my Lupus symptoms while pregnant.
My Lupus did not worsen after delivery.  I'm thinking, although just a guess, that there is a reasonable chance your SS won't worsen.  Do your very best to eat a very healthy diet avoiding sugar and limiting gluten. Drink lots of water and eat lots of vegetables.  These are things that might naturally help to avoid inflammation. 

[veleha]

Thank you for your answer Nomad.

I have read some more about this, and come to the conclusion that it's true very little is known about Sjs and pregnancy due to diagnostic age being often much older than women in their child bearing years. Still, SLE is most similar to Sjs and so I am trying to read as much about it. I found out that the disease prognosis during pregnancy is better when it's not very active during conception and when it has been controlled before and during pregnancy. I am not sure if 'controlled' here means medication, which I don't currently have.

I am already gluten free and eat a very healthy diet, only wondering if gluten free diet is good for the baby, since am not sure how to replace the fibers and other important elements baby could need. I have understood that doctors do not recommend any special diet during pregnancy if it is not very necessary.

But of course one cannot know for sure what happens. I have never actually have a flare with my disease, so don't know how that would feel like. Only my sicca symptoms have slowly got little worse a year by year but are very well manageable. That's the  thing I am so scared of, when having so mild version of Sjs until this and wondering if the price will be very high for the pregnancy. Please, if anyone else have any experiences, I would be glad to hear!

[LovelyDay]

They have done studies on women with pSS who have had babies. There is an increased risk of fetal heart block but that seems to be it. You can monitor for it in the womb.

And many people seem to report that SS symptoms drop off during pregnancy. It might not be a worsening of the disease so much as it going back to normal after your child is born.

I am very young and I would like to have kids someday. I did a lot of research on this.

[quietdynamics]

There is an increased risk of fetal heart block but that seems to be it. You can monitor for it in the womb.

And many people seem to report that SS symptoms drop off during pregnancy. It might not be a worsening of the disease so much as it going back to normal after your child is born.

anti-SS-A has been associated with congenital heart block, an abnormality of the rate or rhythm of the fetal or infant heart.  If you have a positive anti-SS-A, your doctor may want to monitor your baby by fetal echocardiogram, a procedure that uses ultrasound waves to view the action of the heart as it beats. If heart block is detected, your doctor will probably prescribe a corticosteroid medication that crosses the placenta to help minimize the inflammation. Your doctor will continue to treat and monitor you throughout your pregnancy, because heart block may necessitate early delivery of the baby. But Robert I. Fox, MD, a rheumatologist at Scripps Memorial Hospital in La Jolla, CA, stresses that is rare. "It is important to reassure patients that the vast majority of women with Sjögren's syndrome have babies with no congenital abnormalities," he says.

As with other forms of arthritis, Sjögren's syndrome is likely to flare after delivery. Your doctor may prescribe a corticosteroid at the time of delivery and in the weeks after to control flares.

I just leaned that the opinion @ SJS Center is that I have had probably had SJS for decades.
This would include pregnancies. There are some studies on differences in hormones when carrying male/female fetus.. I felt much better with my son. ??
After my sons birth I was exhuasted, This is many years ago and went to Dr.to request a Vit. shot.
Back then the 'rage' was postpartum depression. However, I was not depressed, and wanted to have energy to get out and show off my new baby.
Even though I did not have a Dx, had never heard of SJS or anything.. I muddled my way through with new son (who was a C-section)
Sometimes things can become difficult, sometimes very difficult.. but, not impossible.

Congratulations on your pregnancy.

You have a Dx and Doctors so you will be monitored according to your needs.
And can look into effects of meds on breastfeeding ( major benefits to mother, as well as baby) should you chose to go that route.
Keep up the great work with diet and exercise by walking, stay hydrated.

Best to you.

[Cindy]

Congrats on your pregnancy. I just had my third baby, he is 3 weeks old. I had the same fears as you do. So far everything is the same as prepregnancy. I was taking plaquenil and decided to stop it during pregnancy Im not planning on going back just yet. I want to see if plaquenil was really helping or not. I had a normal pregnancy. I had my other 2 kids before sjogrens. Stress is worst for your baby, enjoy your pregnancy.

[aussie mum]

Congratulations on your pregnancy. 

I totally understand your concerns, as our daughter (who's health conditions are listed in my signature) had her first child last year.

My daughter was diagnosed at 17 and over the years has tried all the normal SJS medications but didn't tolerate any. When she fell pregnant, she was only taking medication for her underactive Thyroid.

Once the morning sickness had passed, for the vast majority of her pregnancy she felt very well. Apparently when pregnant, we produce a hormone that calms our immune system. This thankfully kept her SJS/Lupus symptoms under control.

Due to having the antibodies that can cause fetal heartblock, as she was a public patient, from about 24 weeks she visited the hospital weekly to have bub's heart rate checked. This only took a few minutes, the midwives were checking that bub's heart rate was within a particular range (sorry I cant remember the numbers). Thankfully all was well there.

Towards the end of her pregnancy, she had a few other problems which are common and not specifically related to SJS. She really puffed up, unable to wear shoes from about 6 weeks to go (it was summer). She needed an iron infusion and her thyroid medication adjusted. At all times the Midwives and Doctors were keeping a close eye on her and the baby.

Our dear grand-daughter arrived 2 weeks early via emergency c-section (non SJS related complications in labour). Mum and Bub were both well.

Her immunologist did suggest she schedule an appointment about 4 weeks after the birth, as patients often go into a flare. He was right. Once the pregnancy hormones had gone her numbers did go out of whack. She was VERY fatigued. An eight week reducing dose of Prednisone fixed that up.

Our grand daughter is now 6 months old and is going very well. Our daughter's SJS symptoms are similar to pre-pregnancy but her immunologist has given her instructions on how to take a short course of prednisone if she feels it's required.

Wishing you all the best.
Aussie Mum (Nan)

[cmk1215]

Like everything else, I think this really can vary.  I was diagnosed after my second child but know I had it before either pregnancy - just not officially diagnosed.  After my first pregnancy the symptoms improved and were minimal.  Unfortunately after the second pregnancy they seemed to come back and were even worse.  But I also then had two bad sleepers, horrible commute to work and stressful job so I am not sure if it was the pregnancy or lack of sleep, etc.

[missmeri]

I just had a baby 2 months ago.  I wasn't on any meds prior or during, except my OB and Rheumy had me take baby aspirin daily during the pregnancy.  Most of my symptoms were gone during the 9 months, but oddly my dryness was the worst I ever experienced.  No joint pains and I blame the fatigue on the pregnancy.  I was warned that I'd have a bad flare shortly after birth due to the postpartum hormone surge.  I believe I am currently experiencing a flare, but I don't think it's a bad one.  It's still manageable right now.  Some days are worse than others for me.  I'm curious to see if it gets worse.  I think I started noticing symptoms a few weeks after the birth.
BTW- my diagnosis came after the birth of my previous baby.  For a year and a half after he was born, I felt like I was falling apart and couldn't understand why.  My joints were stiff and painful, I was exhausted and I just felt bad overall.  The drs told me it was because I was breastfeeding and I'd feel better after I stopped.  Well, I stopped after a year and didn't feel better so I did some research and thought I had RA.  After special blood tests it was determined that I have SS.  I was diagnosed a little over a year after I first questioned my symptoms. 

[veleha]

Hello all and many thanks for all your answers and congratulations. :)I am happy, of course still afraid of the miscarriage since being only at the week 7 now.

Yesterday I had an appointment with a rheumatologist who has specialized with rheumatology and family planning and talked with him about my fears. He said that it's not very common with primary Sjs to have a bad flare after the delivery and generally all goes well. Like LovelyDay mentioned, the clearest risk is the fetus' heart block and that will be monitored. He said that with the first pregnancy, like mine, the risk is still only about 2%, when in second ones and others it's much more higher, about 20%. That's why it's controlled with hydroxychlorine (planquenil) in those.

Another thing he mentioned is the antiphospholipide antigens, everyone with Sjs, RA and SLE should check before or during the pregnancy. With them in your blood, there's risk for a miscarriage or blood clots with the mother and those will be controlled with the aspirin which can be the case with you missmeri. But he also said in first pregnancy the risk with the antigens is lower than second and others.

But if there's a flare, I just hope it will pass and my symptoms will return to the pre-pregnancy state with the help of medication if needed. If I am able to carry this pregnancy in term, I feel it's worth the risk, but it would be of course very sad to be for example so exhausted that you're not able to take care of the baby or something. Currently still being trustful with the future and hoping everything goes well. 

[quietdynamics]

veleha,
You are very fortunate to have a Doctor with knowledge and who is 'sharing/explaining issues with you. Having a medical team in place to monitor is so important.. and to allay fears as well.
Hormones can play a part in symptoms. And who is to say that you might not experience some biological 'tweak' of your bodies own making and experience 'remission'.

Women without autoimmune conditions/disease can and do experience fatigue, nausea, etc. (hormones and just part of being pregnant).  Eat healthy and keep walking .. enjoy this wonderful experience. A life growing within you. Sharing this unique time with infants father.

There is data that mothers who breastfeed lower some risks of types of cancer. And early milk (colostrum) is of immense benefit to infants.  So even a short period is of benefit.

Wishing you and family the best.