Sjögren's & Pregnancy - Part 4: I'm Pregnant, Now What?

Congrats! It's a really exciting time!

First thing you need to do:

Schedule a Visit With BOTH Your Autoimmune Doctor & Gynaecologist 

You're going to need them to work together, so make sure they know and are in contact with each other to work together on your pregnancy. You're going to need additional care!

Typically, you're advised to wait 8 weeks since your last period before your first gynae visit, but of course everyone's different, so contact them as soon as you know you're pregnant just to be sure you don't need to see them earlier. I ended up seeing a gynae at 6 weeks, just because I experienced spotting and that doctor gave me a progesterone shot as well as progesterone suppositories given the higher risk nature of my pregnancy. I was advised to have a follow up visit 2 weeks later, but unfortunately, I was in the middle of a move to a different country (it happens to where where all my usual docs are), so I could only visit my rheumatologist (the autoimmune doc) & regular gynae at 9 weeks (3 weeks later). My regular gynae recommended I continue the progesterone suppositories all the way until 12 weeks.

Start Taking Aspirin (If Your Doctor Told You To)

If your doctor recommends you take aspirin as soon as you find out your pregnant, start taking it! You may get flak for taking aspirin daily (I know I did), because some people believe that pregnant women need to avoid ALL medication and stick to "natural" remedies like essential oils and herbs. Ignore them and stick to what your doctor recommends, because every pregnancy is different, especially a Sjögren's pregnancy. Some of those "natural" remedies can even cause more harm than good, so please check everything with your doctor!

What to Expect From Your First Visit....

...With Your Autoimmune Specialist

You'll be told to take a blood test. It's the first of many. If everything's well, you can expect monthly blood tests throughout your pregnancy as they need these to make sure your Sjögren's is under control and your body's not busy attacking your baby. If the results are less than ideal, you may have to have more visits.

...With Your Gynae

My regular gynae had me take a urine test just to make sure my protein levels are alright, but the new gynae I saw in Indonesia (just because of the bleeding) simply gave me an ultrasound and that's it. I actually got a heartbeat during the first visit at 6 weeks! At 6 weeks, it's just a blob, but at 8 weeks, it looks vaguely t-rex like. My regular gynae agreed I should continue the progesterone suppositories all the way until 12 weeks, but she lowered the dosage and I didn't need any more progesterone shots.

Sjögren's & Pregnancy - Part 3: What Should I Consider Before Getting Pregnant

So you're thinking about getting pregnant. Congrats! It's an exciting time!

In my last post, I've talked about the Sjögren's risks, but please, please, please don't think that pregnancy is completely out of the question for you. There are plenty of healthy babies born to women with Sjögren's, so please don't worry too much.

Still, there's some things to consider.

Talk To Your Doctor

Definitely talk to your doctor first about your pregnancy plans. Personally for me, I decided to wait until I got my flare up under control before I tried getting pregnant, but if waiting is not possible for you, definitely talk to your doctor about the risks.

Check Your Insurance

Getting maternity coverage from insurance companies if you don't have it before you're diagnosed is nearly impossible. I'm fortunate I'm already covered, because I looked around and most companies refuse to cover a Sjögren's pregnancy or will only do so in the 3rd trimester, after you've submitted all the test results confirming that the pregnancy is fine. Given the increased amount of visits to doctors you'll need, a Sjögren's pregnancy does get expensive. I'm currently at 21 weeks and based in Singapore, and I've spent about $6,000 so far. I'm expecting to spend more since I will be visiting doctors even more frequently now that I'm in my 2nd trimester and need more checks.

Career Considerations

I could just have very bad luck, but I've talked to other women were pregnant with Sjögren's as well, and it is very exhausting. The first pregnancy symptom I got was feeling so tired, I couldn't stay up in the afternoons and I thought I was having a bad Sjögren's flare up. I actually take 2-8h afternoon naps daily on top of my regular sleep schedule ever since I got pregnant. I'm fortunate I could stop working, but if you can't afford to slow down your career, it may be really tough.

Also, thanks to the Sjögren's risks, you'll be going to the doctor very frequently. It's also recommended you go for a checkup once every 2 weeks instead of once a month in the 2nd trimester. It could be challenging scheduling all your medical appointments in if you have a hectic career.

Stock Up On Aspirin

Your doctor will probably tell you to start taking aspirin daily as soon as you find out your pregnant to reduce the risk of blood clots. Definitely stock up!

Start Taking Folic Acid

It's great to start taking folic acid even when you're just trying.

Sjögren's & Pregnancy - Part 2: What Are The Risks?

So in part 1, I mentioned Sjögren's pregnancies are riskier pregnancies. So...what are the risks?

First of all, if you've read up on the risks of Sjögren's pregnancies like me, I'm sure you went through the same phase as me where I was freaking the eff out. All my doctors have assured me that plenty of healthy babies are born to women with Sjögren's though, so please don't stress yourself out too much.

So, the most serious risk of a Sjögren's pregnancy is...

Heart Defect In The Baby

Also known as congenital heart block (CHB). I don't want to put a number on how high this risk is, because I have no medical training and reading up on the literature available online, the rate goes from "oh that's no big deal" to "holy crap I'm f***ed". I suggest talking to your doctor about this, but my doctor is personally very confident that with frequent check ups and early detection. this is nothing to worry about.

Neonatal Lupus Rash

The baby may be born with a lupus rash. Again, talk to your doctor. My doctor reassured me that this doesn't mean the baby has lupus and all the symptoms usually go away after a few months with no lasting damage.

Blood Clots

Sjögren's does make you more prone to blood clots, and unfortunately that also increased the risk of a miscarriage. Your doctor is likely to put you on a daily dose of aspirin to minimize this risk, so it's not as scary as it sounds.

Higher Risk Of Miscarriage

There is a study that found that there's a higher risk of miscarriage in Sjögren's pregnancies, but even the study notes that the women with Sjögren's in their study group tend to be older, so it could be an age factor as well.

Sjögren's & Pregnancy - Part 1: What's Sjögren's?

Yes, this isn't part of my usual beauty posts, but I'm currently pregnant & suffering from Sjögren's and I thought I should document my experience because sometimes, reading up online on Sjögren's pregnancies can be scary. No two pregnancies are the same, and everyone's symptoms may present in different ways, so this is just my personal experience and yours may not be the same.

First of all....

What is Sjögren's?

It's basically a type of autoimmune that basically just means that my immune system tends to attack everything producing liquids in my body and dehydrating me.

How do YOU experience Sjögren's?

So, I grew up with it and only found out when I took a detailed health exam along with my husband because he never took one ever in his life. The exam included a test of my liver functions, and they found a possible autoimmune reaction and told me to get further tests. I honestly thought it was a false positive because I grew up with it, so I guess I never felt like anything was wrong with me. Only after I tested positive, a lot of things clicked and I realized there's some stuff about me that was "weird".

So here's the symptoms I have...

• "Medical Bad Luck"

I'm prone to all the medical worst case scenarios. I caught mumps after my MMR vaccination, and caught rubella years later as an adult. I caught typhoid fever from one exposure to someone with typhoid. I've gotten amoebic dysentery. I'm prone to infections & can catch a cold from a baby. A flu can morph into a serious sinus or ear infection that requires specialist care. 

• Slow Recovery From Illnesses

Typically, it takes me weeks to months to recover from the flu. The longest it took me to recover from a flu was 6 months.

• Chronic Exhaustion

I used to fall asleep everywhere. I could even fall asleep standing up in a club. Never thought something was wrong though, I just thought that I was lame and get tired easily. 

• Chronic Constipation

Up until I was 24, I thought it was normal to poop only once every 4-5 days. I mean, no one ever goes up to you going, "Hey, how often do you poop?" So I never knew it was weird. I only found out this was not normal when my friend  was freaking out over her baby not pooping that day. I asked her, "Do babies poop every day?"

She went, "Er, people poop everyday. How often do you poop?" 

She told me to go to a doctor ASAP when I told her, so I was given magnesium, digestive enzymes, probiotics & HCL supplements.  I still only poop once every 1-2 days, but that's way better than usual. 

• Swollen Saliva Glands

I've gotten really bad swollen saliva glands since I was a kid. They're typically treated with antibiotics or in really bad cases, the doctor has to make a small incision to relieve the swelling.  

• Chronic Muscle Pain

I never even realized I had chronic muscle pain until I got medicated and realized my shoulders, neck and back feels so light and amazing. 

• Dry Mouth

When my doctor asked me if I had dry mouth, I said no because I genuinely believed I didn't have it. Turns out I did. I only found out a few months ago (2 years after my diagnosis) that normal people didn't need to drink water to help them swallow their food. Again, it's one of those things you don't think of asking because it seems normal when you've always done it all your life. I mean, I know I drink more water than most people, but I've always thought it was a preference thing. And I assumed that's why you're served drinks with your food: to help you swallow it. 

• Dry Skin

Even though my skin is so oily, I can see it's dehydrated from within and it often gets to the point where my lips and the sides of my nose will crack and split. My skincare routine is basically that of a 40 year old's. I've always had to use body butter on my legs, because just using body lotion gives me crocodile skin.

• Loads of Cavities

Sadly, I'm very cavity prone. I always thought it was because of my love for desserts though. 

Maybe this would sound annoyingly chirpy, but honestly, I thought my diagnosis was a bit of a relief, because I've always thought I was just "weak". I kept thinking I was doing something wrong, so my diet became healthier than most people and I still blamed myself whenever I got sick because I assumed it's because I don't exercise or ate too much desserts. Sure, my health check results usually found that I have very a healthy BMI, low blood sugar, low blood pressure, and very low cholesterol, and that should tell me I'm doing something right, but I still kept blaming myself. The most frustrating thing is when people unhealthier than me still tell me there must be something I'm doing wrong to deserve all my "medical bad luck". At least now I know it's not my fault.

Once I got medicated, I also ended up with so much energy and felt so light. For the first time in my life, I didn't have my chronic muscle aches and because I was so used to them, it feels like I'm practically bouncing. Life got amazing. 

What medication are you on?

I'm on 1 tablet of Plaquenil daily. It used to be 2, but luckily I've gotten my stress levels managed and I can move it down to 1. I'm very lucky my Sjögren's is mild enough that I don't need steroids.

I suspect I have Sjögren's. What do I do?

Go to a specialist and get tested. Just warning you, the blood test requires 8 vials of blood, so if you have low blood pressure like me, you may want to bring someone with you. I was really dizzy afterwards.

I've been diagnosed with Sjögren's. Now what?

Talk to a specialist! Personally for me, if I have to have an autoimmune, Sjögren's is mild enough that it's tolerable. Your doctor will prescribe the right medication and it may take a while to figure out the right amount. Here are some things that I personally feel is important to talk to your specialist about once you've been diagnosed with Sjögren's:

Supplements You're Taking 

Some supplements react badly with autoimmunes. I was taking colostrum supplements, which is really useful for boosting your immune system, but unfortunately, Sjögren's gets worse with a boosted immune system. I was also taking these Japanese collagen drinks that tastes soooooo good...but turns out some people with autoimmunes have bad reactions to collagen supplements, so I had to stop drinking that just to be safe.  

Pregnancy Plans 

Sjögren's pregnancies are riskier than normal pregnancies, so definitely let your doctor know what your plans are!