Hello,
I posted a question about pregnancy recently. Thanks again to those who replied, so helpful!
I thought I would ask a similar one, adding that I would love to hear from the ladies of all ages, including 40+/50+ (I'm 37 now, and considering pregnancy).
So, how many of you flared (or did not flare) during pregnancy?
Were you diagnosed or have the beginnings of symptoms during your pregnancy?
My doctors are completely lost when it comes to this topic! My husband is busy singing "my little sjoggie" in the background as I write this :)
I likely need IVF, so I am also scared about the hormones from that, but I figure even more hormone swings in pregnancy or if a miscarriage happens.
Hello. I have had undiagnosed sjogrens for 20 years or more. I had two pregnancies, one at age 34 and one at age 36. I had a hyperthyroid flare during my first trimesters. I was dizzy a lot during most of my pregnancies--sjogrens related or not? Other than that, I had a normal time. I had weird flare ups after both pregnancies, and then things have just gone down hill. I had my first traumatic flare about 1 year after my second pregnancy. We all thought I had MS! I am sero-negative though and didn't have the antibodies that cause heart block in the fetus. I also had a very easy time getting pregnant. Good luck.
Since my hyster, and instant menopause, my hormones and body gone nuts!! Not familiar with being pregnant, but some women
seem to do well during pregnancy because of the higher estrogen levels? I think it might be after having the baby when your hormones are really whacky and may set off some flares. I guess to talk with a few different doctors about it? Im going to my rheumy today..If i remember, will ask her about it.
Gursie
Thanks for your answers. Seems like some people flare and some don't. But many seem to. Gurs- I think you are right, the flare is more common after pregnancy. Ark Mom- I am sorry things have gone downhill :( that must be hard with two kids.
I am realizing pregnancy is a risk and I would just have to be okay with it, should I attempt it. Who knows if I will even be able to get pregnant anyway. With our fertility issues, it would be a serious miracle. Hey, maybe I'll be told I need a gestational carrier and thus avoid the whole issue!
I met with an immunolgist yesterday who said that pregnancy was so amazing because bodies are meant to reject what is foreign, but this doesn't happen when you're pregnant. I guess that is pretty cool.
Your immune system defenses are lowered when pregnant, so it doesn't attack the fetus. My doc. told me that's why the only time I ever got fever blisters was when I was pregnant.
Sorry, I forgot to ask my rheumy. Feel bad for you trying to make this decision. I know before I got my hyster, they told me alot of women get
better with autoimmune in menopause, well, I got 99% worse....My gut was telling me not to do it either..oh well. Everything is a risk.
I think the hormones influence the autoimmune process so much. But, with IVF or pregnancy, at least its not permanant. You might flare a bit with all the changes, but hopefully, will smooth out in time?
I hope you can find the best thing for you. Talk to a few different doctors possibly?
Gursie
Before I even knew I was pregnant, I experienced such severe dry eyes that when I would wake up in the middle of the night, it was hard for me to move my eyes. I was taking the Medical Neurobiology course right then, and was positive something was wrong with my brain! Nobody knew what was wrong, but that was 17ys ago. Happened with my second pregnancy too, but I think I'd received a "dry eyes" label by then from a simple tear check at the optometrist. I DID need progesterone in my first semesters.....that was my hormonal deficit at the time.
My first pregnancy, late, I experienced rashes on my legs etc, no known cause. Breastfeeding my first, around 7mo started feeling feverish in the evenings. It worsened over the months until I was so sick at 12 mo that I finally went to a doc who said I needed to go on steroids......so I decided to wean first, and the feverish feelings resolved with weaning.
I think that's the extent of my pregnancy/bf issues. Good luck!
I was diagnosed with Psoriatic Arthritis (autoimmune) about two years before my first pregnancy but was dealing with autoimmune issues several years before that. I wasn't diagnosed with Sjogren's until 3 years ago, but had symptoms long before that.
I did very well during each pregnancy; the hormones seemed to help me. However, my joint problems got a little worse after each pregnancy and a few months after my third child was born, my arthritis was much worse. My second and third child were only 19 months apart, which was definitely not ideal, as it was too much stress on my body without enough time between pregnancies. About a year after my third was born, I started on Methotrexate and have been on some type of immunosuppressant most of the time since then.
However, I don't regret having my children as they have been such a blessing to me and my husband. They're in their twenties now and are all wonderful, but my youngest has a very special, caring heart, always helping out, etc. So even though that pregnancy was the hardest on my body, he (the youngest) is such a blessing, and I'm so thankful we have him.
Becky
I had not yet been diagnosed when I was pregnant, at ages 36 and 39. But I know the sicca had been around for many years. I felt much less dry during pregnancy. My skin was better, too.
Overall, I could not say that I loved pregnancy. Of course, the second trimester was best. I had large-ish babies--9lbs., 10.3lbs.-- and the unweildyness of my body contributed to overall exhaustion.
After the babies were born, I recall being extremely tired, stiff and achey. Had I realized that I had Sjs, I would have eaten a diet to minimize inflammation, as I now eat. I would suggest that you may be less likely to flare if your diet does not include wheat or dairy or nightshades.
If you are able to stay home when you don't feel well, no job demanding your energy, it will be easier.
I guess that last comment would apply to nearly anyone!
I was just diagnosed this past September. I am ANA+ and SSA+. I have two healthy boys (3 yrs and 18 mo.). I am pretty sure that I had undiagnosed Sjogrens for both pregnancies, especially the second. I am so thankful that neither had heart block. Both my boys were fairly small (6 lbs 7 oz. and 6lb. 9oz.),which resulted in frequent ultrasounds at the end of pregnancy. For my second, I had very low amniotic fluid at the end. This also resulted in my final weeks being very closely monitored with ultrasounds, etc. Ultimately, I think I had a harder time during the aftermath of each pregnancy. I did not seem to handle the hormone changes very well, especially after the second (hence all the doctor's appointments and eventual diagnosis). My most troublesome symptoms were dry/red eyes and EXTREME fatigue and muscle aches. Of course, my doctor initially wanted to chalk this all up to being a busy working mom (I wish!). :)
I wish you the best of luck in your decision making! I just found out several weeks ago that I am pregnant again. This was a shock, as my husband and I had decided with my diagnosis that we would not try for any more. I feel this child is a blessing and I pray every day (many times) that all goes well.
Such helpful responses, I have read them over a few times already :) And I read them aloud to my mom, sister, and husband.
Gurs- thanks so much for even thinking to ask your rhemy. That was so kind.
Some bad news on my end Friday, I may not be able to hold a pregnancy due to uterine factors. We have such nightmarish fertility issues that keep getting worse. So I may have to outsource the pregnancy to a gestational carrier, depending on what the next tests/surgery shows.
It's just too much all at once. Finding out all this, and the sicca syndrome starting at the same time. I'm trying to focus on the positives, and there are a lot of those. My future just looks so different from what I expected, and there is mourning to do, along with all the hassles of dealing with my symptoms and the stressful fertility investigations. I am basically in hiding from my friends at this point as I try to pull myself together.
I'm still interested in others' pregnancy experiences, for myself and for others since our doctors are often so clueless on this topic. So please still reply if you have something to add!
I'm 29 and expecting my 3rd child. I have two healthy sons ages 9 and 2. I was diagnosed with Sj after my first pregnancy in 2003 when my son was 1 month old I was having extreme dry eyes to the point I couldn't open them. An ophthalmologist diagnosed Sjogren's and referred me to see a rheumatologist which confirmed everything. I had always had the symptoms of dry eyes, joint pain and excessive thirst throughout high school but never went to the doctor my parents thought I was just being a lazy teenager and needed to exercise. Go figure! About 2 months after given birth to my 2nd child I had shingles the doctor told me it was due to my immune system being weak after pregnancy and probably came in to contact with someone who had chickenpox or something similar. It was extremely painful for about 6 months. During both pregnancies my symptoms were almost completely gone no more joint pain, eyes were still dry but not as severe and I had more energy but after both pregnancies came the flare ups. I've learned to live with Sj and have a very active life caring for a wild 2yr old and an active 9yr old soccer player along with a full time job. I have dry eyes, joint pain/inflammation, dry mouth, hypokalemia, vasculitis. As of today I am only taking potassium and tylenol my rheumy said she may or may not start me back again on plaquenil. Hope this info helps and good luck with your family planning :)
This is probably a huge generalisation, but my daughter's specialist said that most women with SJS feel better during pregnancy as we naturally produce a hormone that calms the immune system so our body doesn't harm the baby.
He said for the immune system, being pregnant was like taking prednisone.
Wishing you all the best.
Aussie Mum
Thanks for the responses about pregnancy. This forum is so great!
So, as it happens, I probably need a surrogate/gestational carrier if I'm ever going to have a biological chid. This is unrelated to anything autoimmune.
I'm seeing it as a blessing in disguise. At least I won't get sicker due to a pregnancy, since pregnancy is likely impossible! Now I just have to a) make embryos, b) find someone to have the pregnancy, and c) find some way to pay for it.
Oh, and d) not get stressed through the process!
And if I don't have a child, the blessing will be a more stress-free life and no risk of passing on autoimmune disease to a child.
Yup, trying to look on the bright side. It's actually working, I'm in a pretty good mood for the past few days.
This is a great thread. I too had a flare during pregnancy last year and got really sick after I lost the baby at 10 1/2 weeks. It was a traumatic miscarriage more similar to preterm birth. My husband and I decided it's too risky to try but I keep waffling. I dont want to get sicker! I am scared to get pregnant again even though I always wanted to be a mom. It's such a hard decision!
Hugs and thanks for the frank discussion.
Brooklyntina, {{hugs}}! btdt I had a miscarriage at 7 weeks and was so afraid to go through that again, that we kept putting off trying. A year later, I actually got pregnant on accident (condom baby) and was thrilled. The pregnancy wasn't perfect (see below for additional supports that helped me sustain it) but the outcome was completely worth it! I would recommend seeing a specialist before getting pregnant again and be followed by a specialist when you get pregnant.
Even though I had no problem getting pregnant, I self-referred (my OBgyn was completely unconcerned about my miscarriage, literally patted me on the head and said that many women have them, no biggie and try again....er, bite me) to a reproductive endocrinologist after my miscarriage. I wanted to be fully checked out to make sure I didn't have other health conditions that may have contributed (and would contribute again) to a miscarriage! He listened to my history and then ran a bunch of bloodwork, which is how I found out I had antiphospholipid antibodies (which can....tada.....cause miscarriages). He also discovered that I had weird hormone cycling so when I did become pregnant, he had me get immediate bloodwork measuring my progesterone level (and hCG etc). My progesterone was too low to sustain a pregnancy. I was started on daily baby aspirin and progesterone supplements (this, only for the first trimester) and 8 mo later had a baby boy! I did the same with pregnancy #3.
Aussiemum, you may be right. My understanding is that there is supposed to be immune suppression so that the body doesn't attack what is essentially a "foreign body" growing in the mom. For those of us with autoimmune disorders, perhaps we are even more likely to attack it (I wonder if that's what happened before my first miscarriage because I did feel poorly before it happened). At the time, I apparently had low levels of progesterone and I later was diagnosed with adrenal insufficiency, so maybe my body simply didn't do enough on its own to reduce the immune response (and maybe the exogenous progesterone helped in that way?).
Thank you so much Friedbrain! I have been to a hematologist and a high risk person- both said I was fine. I didn't take aspirin last time... I too get pregnant extremely easily despite not being a spring chicken. But during the pregnancy the sudden BP drops/ racing heart symptom started and so did the raynauds. They got a little bit better as time has gone on (almost a year now) but now I'm stuck with these extremely annoying symptoms I didn't have before. I'm afraid that if I try again the Sjogrens fairy will bring me a new gift. Is it worth it if I'm not even sure I can sustain a pregnancy successfully?
By the by, I've read that 10 1/2 weeks is the norm for SS's miscarriages. Something about the placenta forming being tricky. It's a pivotal time for blood clots and sometimes we don't make enough amniotic fluid... ugh. I wish I had a crystal ball. I'm so tired of every decision being so difficult. I am going to have my mercury fillings out and see how I feel.
The worst part is that I am hyper fertile since loosing the baby! I am totally aware of my egg drop and I avoid my husband completely during that time (even though RARRR! I don't want to hehheh).
Hugs ladies. Thank you so much for sharing and bringing this to light. It's a biggie.