Deciding to start or expand your family is a huge (and exciting) time! But when you have MS – or any other autoimmune disease for that matter – there are certain things you need to take into consideration that make the process a bit more tricky.
One of the most personal parts of my MS journey has been having a baby – from trying to conceive, to being pregnant, to hoping and praying every day post-birth that I wouldn’t have a relapse. I’ve learned that there are many young women that are just like me – dealing with an autoimmune diagnosis (this is so much bigger than just MS) and also want to start a family but have many of the same questions / concerns I did.
I’ve spoken to several of those women and realized that there’s not a lot of info out there on this critical topic. While I am certainly not an expert or medical professional, I can share my experience and hope it can be helpful for others. I know for me, even knowing that other women with MS successfully got pregnant and started families post-diagnoses was comforting.
Please note that I’m not inferring that my choices are the “right” ones, or offering medical advice in any way. I would advise you to work with a licensed physician to determine what’s best for you and your situation.
Q&A: Pregnancy and MS
Trying to conceive
When you decided to get pregnant, were you already on a medication? If so, how long did you have to be off of it to try to conceive?
I was recently diagnosed with MS before we decided to get pregnant and therefore was not yet on a MS medication. I had, however, just come off of a relapse so I was taking Prednisone to combat symptoms. My doctor suggested I continue taking Prednisone which was safe to take while trying to conceive and also effective for combating new lesions.
I’ve heard, however, that it’s ideal to be off of a MS medication for enough time for the medication to leave your body before you try to conceive (you’ll have to ask your doctor for a specific amount of time).
What’s Prednisone and why did you go on it?
Prednisone is a steroid that can be given orally or through IV infusions. It is not an approved MS medication.
I used Prednisone for two reasons: 1) To help with existing symptoms (it helped me regain my vision) 2) It can be a short-term “protector” from getting new lesions without medication.
It was also a short term solution while I was trying to get pregnant. My doctor said it was ideal to be on them for no more than 6 months (ideally 3). Your body eventually becomes accustomed to them and then cannot help mitigate symptoms or prevent new lesions.
What is the infusion process like for Prednisone?
I was infused with 1000 mg every day for 5 days in a row. The first few times it’s recommended that you’re in the hospital because it’s an aggressive dosage of the drug and they need to monitor your vitals. I’ve since had a nurse come to my house to do in-home treatments. There are also clinics that have this option.
I underwent infusions every 2-3 months except for the months I was carrying the baby. I started them again the day my daughter was born.
How does Prednisone make you feel?
I’m not going to lie, not great. In fact, I dreaded the days I had to do it. You feel wired, very jumpy and aren’t able to sleep (it’s a steroid so this make sense). They made me anxious and I just didn’t feel like myself. It also had affects on my eating habits and blood sugar levels which you can read about here. You need to carefully monitor your food intake the week before, during and after the infusions. But, I would do them again in a heartbeat because they made me better and relieved my MS symptoms.
Were you on any kind of medication while pregnant?
No, it’s not recommended that you take anything while pregnant. I’ve heard that Prednisone has been a “last resort” option if you’ve had a relapse during pregnancy, however.
How did you feel during pregnancy?
Wonderful. I know a lot of women hate being pregnant but I luckily had a great pregnancy with practically no MS symptoms, only numbness and tingling occasionally. I was told that during pregnancy, your body releases a hormone called estriol which is supposed to mitigate MS symptoms. This is so effective they’re trying to use this to develop a long-term medication based on this.
Did MS affect your childbirth in any way?
Not really. I would recommend telling your doctor and your anesthesiologist in advance, however. I had no trouble getting an epidural which I was originally concerned would be an issue.
I’ve heard relapses after pregnancy are common. How did you try to avoid this?
Yes, the chance of relapse goes up almost 4x in the first 6 months of pregnancy because of hormonal imbalances. Starting with the day my daughter was born, I did 5-day treatments of Prednisone. I did 3 treatments total so I could breastfeed for 3 months. I was told by several doctors that Prednisone was 100% safe while breastfeeding. You can read about my experience breastfeeding here.
Reducing stress and getting sleep is critical for postpartum (easier said than done with a newborn, right?) so I also tried to rest as much as possible.
Were there any changes to your MRI after birth?
Yes,I did get two new lesions during my pregnancy on each side of my brain. Obviously, this isn’t ideal and it’s not clear when during he pregnancy process I got them, but luckily they were not active and didn’t cause serious problems.
Were you able to breastfeed with MS?
I did. My doctor recommended that I go on a medication right away to better fight the chance of a relapse but breastfeeding was important to me, so I figured out a way to do it for 3 months. My post here on breastfeeding elaborates further on how I did this, and what it was like.
What MS medication are you on now?
I am on Tysabri and feeling great for the most part. You can read about my decision to go on it here and how the process has gone so far here.
Do you plan on having another baby and if so, would you do anything differently?
This is a difficult question and one I cannot answer yet. Yes, we would like another child but my health is most important and going off of medication again is a risk. There are other options that we will consider but right now, my focus is on my daughter and being on my existing medication for at least 12 months to determine effectiveness.
Did I miss anything? Let me know if you have other questions!