We’re expecting a second little Meena in June 2021! This first trimester has been quite different compared to my previous pregnancy – and not just because I’m taking care of a two-year-old while pregnant. My medical care has gone a bit differently and I’ve had more varied and intense symptoms.
Thankfully, my lupus hasn’t been as intense – so far – and I have a lot of help. In this post, I’m going to detail what it’s been like to go through the first trimester for a second time with lupus, chronic pain, and a toddler.
A bit of a rough start.
As I prepared for an appointment with my rheumatologist to talk about starting rituximab (an antibody therapy used to treat cancer and autoimmune diseases) and I wanted to be sure I wasn’t pregnant. I was nine days late, which is not unusual for me since I have polycystic ovary syndrome (PCOS); I often have 45-day long cycles. I had actually taken a pregnancy test when I was five days late and it was negative, so I wouldn’t have taken a second one anytime soon if I wasn’t preparing to discuss rituximab with my doctor.
I was floored when I saw the positive lines on the pregnancy test. Due to my health, we weren’t planning on another pregnancy and weren’t even sure if I could do it again.
It took me several weeks to adjust to being pregnant. I struggled emotionally because I had been working towards trying new treatments for my chronic pain and illness, which I didn’t think would be possible during pregnancy. It was hard to accept losing progress and access to those treatments when I had been suffering so much (read about my health journey in 2020).
Towards the end of my first trimester, I learned that I wouldn’t have to alter most of my treatments, and that helped me get past the worst of the struggle. But I also had deep concerns about my ability to take care of two kids. I still do. Thankfully, Toddler Meena is a great helper and shaping up to be a great big brother.
Early medical care.
I was a bit shell shocked at my rheumatology appointment since I had just discovered the pregnancy. My doctor was great about it, though, switching gears immediately, reviewing my medications, and sending a referral to Duke Medical Center in Durham, North Carolina. She sent me to a rheumatologist who has specialized in lupus and pregnancy for 15 years – and this has been a huge blessing. I’m thankful that this pregnancy has provided an opportunity to learn from another expert.
Unfortunately, I didn’t have the same great experience when I went to my OB for my pregnancy confirmation the following week. My OB’s office has several different doctors at the practice that you rotate through during pregnancy, and my appointment was scheduled with one I’d previously had a good experience with. I was totally unprepared when he was critical of me for having an unexpected pregnancy. It may not have been planned, but there wasn’t anything wrong with it and there was no need to make me feel guilty.
It got worse – he took my list of medications and crossed off almost everything. He did not pause to ask a single question about why I needed them or if we could find alternates. There was no discussion about managing pain. I couldn’t believe this was happening again – in 2017 I had a similarly upsetting experience during my pregnancy confirmation at a different doctor’s office. I left that office for this one, where I had great care during my last pregnancy. I was not prepared for my doctor’s treatment and attitude and I became distressed.
I started to advocate for myself since my rheumatologist had already reviewed many of the meds. But then he started to talk about why I should consider stopping Imuran and Plaquenil – the main medications used to suppress my lupus – and then I knew his opinions were outdated, incorrect, and there was no point in arguing with him.
He went on to say I shouldn’t bother going to see the specialist at Duke because the maternal-fetal doctors are sufficient. While the maternal-fetal doctors in my city are phenomenal, they don’t specialize in lupus and can’t offer me the same insights. I was angry at this point and decided that I would never be scheduling with this doctor again. How could I take him seriously when he tried to convince me to not see the specialist? I want all the information I can have about my health during pregnancy.
I did decide to return to the office and I’ve had fantastic experiences with the rest of the doctors. But I’m sad that I had to go through another hurtful pregnancy confirmation appointment. I’m also sad for all of the women like me who are having similar experiences – especially since they are completely unnecessary.
Every high-risk pregnancy specialist I’ve seen has allowed me to stay on medications that other doctors would often want to remove, and they’ve done so by reviewing robust research. It takes experience and education to learn guidelines for medication use during pregnancy, but that’s no excuse for your standard OB to recommend stopping much-needed medications without offering alternatives or a referral to a specialist to discuss them.
Pregnant women should not have to suffer from high pain levels or a disease flare-up because some doctors are close-minded about medication options during pregnancy. I am not staying on these medications for fun – I genuinely need them to function every day.
Pregnant women should not have to suffer from high pain levels or a disease flare-up because some doctors are close-minded about medication options during pregnancy. Click To Tweet
First trimester OB appointments.
My next OB appointment was for my eight-week ultrasound. However, the ultrasound revealed that I was only five weeks and six days. That was a surprise but it did explain why my first pregnancy test was negative. We can only guess that I had ovulated late, which is not unusual with PCOS. My due date changed from June 2 to June 11, and I returned for another ultrasound the next week to make sure that the baby was progressing. I got a 12-week ultrasound with my maternal-fetal doctor, adding up to three chances to see my little one during the first trimester.
The change in my pregnancy timeline meant that I had actually found out I was pregnant at three weeks, which is kind of neat since last time I didn’t find out until seven weeks. I’m glad I got an earlier start.
I had two other regular OB appointments during my first trimester and a lab visit for sequential screening blood work, which is a test that checks for genetic irregularities and neural tube defects. I also had to complete a 24-hour urine test. The protein level in the urine test provides an important baseline if you’re at high risk for preeclampsia or, in my case, a lupus flare-up (both conditions can lead to excess protein in the urine).
In total, I had five OB appointments and one maternal-fetal visit. That’s a lot for the first trimester, but not unusual for a high risk patient or someone whose ultrasounds don’t match up with their cycle dates.
Lupus and chronic pain management.
I saw my rheumatologist on what turned out to be week three of my pregnancy and, thanks to her referral, went to see the specialist at Duke on week 10. My rheumatologist ordered an AVISE CTD test right away once confirming my pregnancy so that we could learn as much as possible about my lupus disease activity.
The AVISE test can look at biomarkers for lupus with greater sensitivity than standard laboratories. It also looks for other autoimmune issues such as Sjögren’s syndrome and rheumatoid arthritis. Some people have this specialized test performed regularly, but my doctor only orders it under specific circumstances. It cost about $1,500 but my insurance covered most of it.
I had the results by the time I visited Duke, which helped to paint a more complete picture of my lupus. The hour I spent with the rheumatologist at Duke was unlike any other medical appointment I’ve ever had; the doctor was so thorough and attentive. During the visit, I learned that my type and level of lupus put me at low risk of pregnancy complications – yay! I was experiencing many lupus symptoms and a lot of inflammation, but none of my blood work indicated active disease. I left with orders for even more specialized blood tests.
Part of the lab work was measuring the levels of Plaquenil and Imuran in my blood. I’m familiar with doctors using these tests to check compliance (to make sure the patients are taking meds) and absorption levels (to see if it’s reaching an effective dose in the body) and I was excited to have more knowledge about how my medications were working.
Unfortunately, my Imuran (azathioprine) metabolite results came back with bad news. The metabolite that is supposed to suppress my immune system, 6-TGN, wasn’t doing a stellar job and the metabolite that can cause liver toxicity, 6-MMP, was nearly three times higher than the maximum limit. I was taking a higher dosage and my body wasn’t handling it well. Thankfully, my liver wasn’t affected but it was certainly in danger of being damaged before long with such high levels.
Even though I was alarmed that my 6-MMP level was perilously high, I still felt panicked when the doctor said I’d have to stop the azathioprine for a week and then take ¼ of my previous dose for a month until my levels went back to normal. I was worried that my symptoms would flare up terribly and I would suffer like I did during my last pregnancy. So far, the only thing that’s gotten worse is my chronic dry eye and inflammatory eye issues, which has been tough. I was able to start an immunosuppressant eye drop that has helped some with that problem.
I’m now taking ½ dose of azathioprine compared to before and will likely stay on that. I’m grateful for the extra monitoring that’s kept me safe and my baby from being exposed to a higher level of my medication. I returned to Duke at 20 weeks and I’ll talk about that in my second trimester blog post.
It’s hard to say what other lupus symptoms were present in the first trimester because I was so inactive from fatigue and nausea. There was a fair amount of joint pain and fatigue, but some of that could be from the pregnancy. I did have a lot of chronic pain, however. I was advised to stop taking gabapentin and spent week three through week 10 going through the most awful withdrawals. I wasn’t really sleeping at night because of it and my chronic neck pain was through the roof.
I saw the rheumatologist at Duke shortly after I had finished weaning off the gabapentin and explained to her that my pain was completely unmanageable. She told me that people stay on gabapentin during pregnancy all the time and started me on 600mg daily (I was on 900mg daily before pregnancy). Shortly after that, I saw a maternal-fetal doctor who said the same thing.
I wish that I had reached out to them before starting to wean off gabapentin because I could have avoided the awful two months-long withdrawal process. I had enough struggles in the first trimester and I wish I didn’t have to deal with the extra challenges of stopping gabapentin if it was unnecessary.
I also learned that it was okay to take my breakthrough pain medications as long as I did so infrequently. A low dose of my pain meds taken once a week or less poses very little risk to the baby. Learning this was a huge relief because going through acute pain flare-ups is hard on me as a chronic pain patient. Overall, life is easier and healthier when we can treat the pain, which can help me to move through the flare more quickly.
First trimester pregnancy symptoms.
Nausea: I have had pretty severe nausea from week six well into the second trimester. During my first pregnancy I lost 20 pounds in the first trimester from nausea, and this time I lost 10 pounds. But that’s not because it was easier; I lost less weight because I had to force myself to eat in order to care for my toddler. There was no way I could take him to therapy or play with him if I wasn’t eating anything.
Doctors generally advise using antihistamines, such as Unisom, for first trimester nausea. Unfortunately, I cannot tolerate antihistamines because they cause more severe dryness in my already dry eyes and they cause my restless legs to become unbearable. Another medication used for nausea is vitamin B-6, which I’ve been taking but I don’t know how much it’s helping. After my first trimester was over I was given prescription meds since I continued to have intense nausea.
Another symptom that’s almost as annoying as nausea is food aversions! Nothing sounds good to me and almost nothing tastes good either. So even if I’m able to eat something that I normally like, I don’t usually feel satisfaction from it. It’s been really frustrating for me to attempt to eat since I can’t enjoy it most of the time. I didn’t realize how discouraging it could be to not have a good-tasting meal for so long.
Migraines: I started getting headaches in week five that were pretty unbelievable. They quickly got bad enough that I think they were migraines. They were happening two to three times a week and would often last for an entire day or more. After a headache that lasted 12 hours and was so bad I wanted to go to the ER (the only reason I didn’t go is because of COVID-19), I was given prescription migraine medication. I’ve only used it once, as the headaches calmed down after the first trimester, but it’s such a relief to have it and know I won’t have to suffer as much if it happens again.
Restless legs: I could hardly believe it when my restless legs started bothering me – a lot – at six weeks; they didn’t cause issues in my first pregnancy until my third trimester. But at just six weeks pregnant I was already unable to stand the pain in my lower legs and feet. Part of this could have been the gabapentin withdrawal, but going back on the gabapentin didn’t fix my restless legs problems.
I started taking magnesium 600mg a day and that brought it down to an almost tolerable level. Physical activity usually helps as well, and I bought compression boots to use when it flares up. Taking a bath can help, but I often can’t sit in the tub because of my neck pain. Overall I’ve managed to get it relatively controlled but I am concerned about how much worse it will get since it has already been quite bad.
My super fashionable compression boots.
Other: I experienced fatigue, but it was just an increase in general tiredness instead of the passing out from exhaustion that happened in my first pregnancy. It was more manageable and some of it was probably just lethargy from not eating. I was emotional, but again not as bad as the first time. I had a fair amount of abdominal pain and cramping, which is normal. I constantly felt dehydrated despite drinking 100-120oz of water daily. I’ve never really struggled with drinking water before so it was strange to force myself to drink water and still feel thirsty.
I started to feel movement around week 12, about six weeks earlier than my first pregnancy. But I didn’t start out feeling baby flutters – this baby started pushing on me. Like doing stretches or something and it was uncomfortable, at week 12 no less! This made me nervous considering how hard my first child kicked and punched in the third trimester.
Even though it’s common for things to happen faster for second time moms, I felt like my body just decided to fall apart after getting pregnant this time. I was alarmed at how things started deteriorating much earlier than I expected. I also started to show sooner, which is normal since my muscles have been stretched out before.
I was surprised to have different and more exaggerated symptoms. The migraines and nausea led most people to guess I was expecting a girl, in fact, so many people guessed that I was having a girl that sometimes I would forget I didn’t actually know yet.
It’s hard to deal with pregnancy symptoms on top of autoimmune symptoms and chronic pain. I was already feeling pretty overwhelmed with my physical struggles before getting pregnant, and I’ve had a hard time dealing with additional suffering and physical setbacks. Nonetheless, I’m thankful that I made it through the first trimester with a healthy baby.
Looking forward to two more trimesters.
Okay, well, I don’t know how much I’m looking forward to it.
Something I’ve really enjoyed is the What to Expect birth group community. The online support I’ve found in my birth group has been amazing and I feel like it has already prepared me more than the book I read last time, “What to Expect When You’re Expecting.”
In the birth group, I can read about what other people are experiencing symptom-wise and ask questions as we go through it together. It’s introduced me to all sorts of unusual issues and symptoms that you wouldn’t find in a generic pregnancy guide – I really feel a lot better since I don’t wonder if I’m the only one experiencing something. It’s even helped me to differentiate between lupus symptoms and regular pregnancy symptoms. Every day I read a few stories from other moms that are going through the same thing as me and it’s provided essential emotional support and education that’s helped me cope with everything. Many of the second and third time moms have given advice that I so wish I had the first time!
Things are very different this time around, between being pregnant during a pandemic and a mom to a two-year-old with a speech delay and developmental delays. We’re all a little squished in the house and our third bedroom is currently my husband’s office, though it’s not like baby will need it anytime soon. It’s been lonely going through this during COVID-19 but at least there hasn’t been much to miss out on when I haven’t been feeling well. Having this first trimester experience be different in so many ways has helped me to remember this child is their own person and will be bringing something totally unique to our family.
So, In both your pregnancies you were on immune suppressants and when your pregnancies got confirmed you were asked to stop your medication until 14 weeks? And you did Stop, Am i right dear?
In both my pregnancies I was taking Plaquenil and Imuran. In the first pregnancy, my doctors were not adequately informed about the safety of the medications and asked me to stop taking the imuran. It wasn’t until I met with my maternal fetal doctor that I was able to resume the imuran in my first pregnancy after being advised it was a safe scenario for me. In my second pregnancy, I had to pause taking Imuran because it was becoming toxic to me due to being on a higher dose for a few years, but I did resume it at a lower dose until the end of my pregnancy when I switched over to a biologic medication.
Did you stop both Plaquenil and Imuran or just Imuran?
I did not have to stop Plaquenil, those results were within normal ranges. I only paused Imuran and then I stayed on a low dose until switching to a biologic medication. I left a more detailed answer on your other comment.
Also tell that when your Imuran (azathioprine) metabolite results came back with bad news, how much mg of imuran were you taking before and to how much mg you were shifted afterwards?
I was taking 200 mg imuran, but it’s important to consider the weight based dosage (for me, this was 2 mg/kg). I had been on this dose for almost two years after spending a year titrating up to 150mg. When I got the metabolite results I stopped the medication for three weeks and retested, at which point the levels were back to normal. I then resumed 50 mg and continued to get the metabolite testing every few months. My doctor offered to increase the dose to 100mg, but I was too concerned. I ended up switching to a biologic medication and stopping imuran altogether after my pregnancy.