Lupus, Pregnancy, and Motherhood

Last updated: June 2022

Growing up, I knew I wanted to be a mom. But, with my lupus diagnosis, my dreams of starting a family were put on hold. I was only 27 when I was diagnosed and needed to start various medications. Two of those medications were CellCept and losartan. Both of those medications would harm the baby if I ever got pregnant. So, I had to weigh the pros/cons, and eventually, I came to the decision that I needed these meds if I wanted to get better. I was hoping for some quick fix, and my lupus would go away on its own. But, of course, that's never the case.

Friends starting a family

I sometimes got jealous or sad seeing my friends get married and starting a family. Even when watching tv or a movie, I sometimes burst into tears knowing that I couldn't have that yet. I felt my life was at a standstill. I didn't know whether these medications would work and what would happen in the long run. It was all a game of chance, and I was hoping and praying for the best.

Lupus and medication management

There was a lot of trial and error in the beginning. At one point, I was taking 18 pills a day. Based on my labs, my doctors would increase the dosage of one of my meds and then decrease the dosage of another.  
With lupus, it's not a one size fits all concoction of medications, so I had to do blood work and urinalysis every month to see how my body was reacting. Eventually, the doctors saw positive results, and I was happy about that. The combination of whatever was being prescribed seemed to be working. Soon, I had follow-ups every 3 months instead of every month.

After getting the right dosages a few years, my doctors noticed that I was no longer improving, but I wasn't getting worse. It seemed as though I had hit a plateau, and this range was, I guess, my new normal. We continued with the treatment, and at this point, I got engaged. So we revisited the idea of babies and starting a family.

My doctor agreed since I was doing well, I would be able to start to wean off the meds. Another thing with these medications is that you can't just quit cold turkey if all is well. There needed to be a 6-month detox period before I could even try to conceive. So, I started decreasing my dosage and monitoring my levels every month. Thankfully everything was going good, and after almost 5 years, I no longer needed CellCept or losartan and only had to take Plaquenil.

Pregnancy and lupus

All my doctors gave me the green light to start trying to conceive a few months after I got married. It felt like perfect timing. A part of me was happy, but another part of me was scared. With lupus, it would be considered a high-risk pregnancy, and the fact that I'm 32 also adds another layer of stress. I immediately made an appointment with a high-risk OB. I wanted to gather as much information as possible before we even started trying.

It felt surreal to be at a preconception visit. I was filled with so much emotion and even cried during the appointment. I fought so hard to make it here, and I finally made it. I asked her about the complications, what to expect, etc. It was really daunting to hear all that and made me even more nervous. But, I was really glad that my husband and I made this appointment. It prepped us on what to expect, but I was even more confused as to what I had wanted to do.

Motherhood is within reach

Now that it was finally in my grasp, I wasn't sure how I should move forward. My husband was all for whatever I chose. It was my body, and I had to be comfortable with what would happen. A part of me wants to try now, and another part wants to continue to wait and see what happens in a few more years. Adoption is also on my mind. So, many questions were running through my head after that appointment. If I wait, would I still be healthy enough? What if my labs change? If I try now, would my body be able to handle it? What if I don't get pregnant right away, and I get sick again? Do I just preserve my health as is and not chance it and adopt?

It's such a hard decision that I never thought I had to make. But I just can't explain the feeling. I don't know what I just want. All the what-if scenarios are running in my head, and it just makes it harder. But, I do believe everything happens for a reason. So, I am curious to see what happens these next few months. Whatever the outcome will be, I will be sure to keep everyone updated.

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