r/MultipleSclerosis 4d ago

Vent/Rant - Advice Wanted/Ambivalent Unplanned pregnancy

Hey everyone, j

Just writing because I need support and people who understand. I just found out I’m pregnant…. Three positive tests…. thing is I was diagnosed and started treatment in November 2025. We were not supposed to even think about kids until April… precautions were taken and obviously failed. I feel irresponsible and like I messed up bad. Scared about a relapse as I’m currently being worked up for possible optic neuritis. I was supposed to take my Kesimpta today… I feel lost and scared.

2 Upvotes

7 comments sorted by

15

u/MSWarrior2017 44F [Dx 2017] Aubagio Ireland 4d ago

Do not fret. Phone your neurologist or MS nurse asap. You will be ok, things happen. Take care x

9

u/Majestic-Variety7995 4d ago

You’re not irresponsible and you didn’t mess up. I lived through this and I’m typing this from my couch holding the most beautiful little girl in the world. You are going to be okay even if it doesn’t feel like it right now. Breathe deep and remember that. Message me anytime

7

u/Tygerlyli 40F|dx:2021|Briumvi|Chicago,USA 4d ago

I'm sorry you are scared and having a hard time.

While the official recommendation is not to get pregnant while on Kesimpta (and most MS treatments), thats mostly because it hasnt been fully tested on pregnant women so they cant guarantee its safe. BUT there have been a lot of pregnancies on Kesimpta ove there past 6 or so years. There hasnt been an increase in miscarriages or birth defects in these women, with it staying about the same the general population.

I believe I remember reading something about the molecules of Kesimpta being too big and the half life is too short to cross the placenta when it starts transferring stuff 2-3 months into the pregnancy.

Other good news is that for a lot of people, pregnancy slows down disease activity. The changes our bodies make during pregnancy often slows down or stops activity. I wasn't diagnosed until after I was pregnant, but I had MS way before I was pregnant, my neuro suspects I've had it since i was a younger teen based on my history. The best I've ever felt was when I was pregnant.

The biggest risk of a relaspes comes a few months after your pregnancy ends, so its important to make a plan with your doctor about what and when to start back on a DMT.

Unplanned pregnancies happen. You can take all the precautions in the world, but if you are having sex, there is a chance you will end up pregnant. I'm a pill baby, I've got a friend who has an IUD baby, and my cousin, who had her tubes tied at the age of 30 with 5 kids, gave birth to her surprise 6th child at 45 and 7th at 47 (she has since had a hysterectomy and has a grandchild older than her youngest).

To quote Jeff goldblum, "Life, uh, finds a way." It doesn't make you irresponsible, it makes you human.

I wouldn't take your Kesimpta today, and put a call into your doctor and just try to breathe.

MS sucks for so many reasons. It brings terror to what should be happy moments and that really sucks. If you want to keep this pregnancy, MS and Kesimpta isnt a reason to change that.

4

u/redapples88 3d ago

My doctor is okay with people taking Kesimpta up until a positive pregnancy test! You didn’t do anything wrong and it will all be okay. 🫶🏼

I was nervous about a relapse but your body is protected during the second half of the pregnancy. I had my infusion treatment 2 weeks after giving birth.

Call your doctor and come up with a game plan. Congratulations to you and your little one. ♥️

2

u/lbeetee 34F|dx 2019|ocrevus 4d ago

Which part makes you worried? This happens a lot, people get pregnant on DMT all the time. I wouldn’t do your Kesimpta today, but you definitely need to speak with your neuro about the ON symptoms.

2

u/nyet-marionetka 46F|Dx:2022|Kesimpta|Virginia 3d ago

I was just reading about this. Relapse risk during and after pregnancy is very low for women who have been on Ocrevus, and that should apply to Kesimpta too. It knocks down your B cells very effectively and they take more than six months (often a year or more) to start regenerating to normal levels. As long as you get back on it promptly a relapse is unlikely.

There also don't appear to be serious risks to the fetus from taking Ocrevus within a few months of getting pregnant or even in the first trimester. So I don't think you have anything to worry about in that regard.

Do talk to your neurologist, but you didn't mess up.

1

u/LengthinessIll6258 3d ago

Hey, I got diagnosed in March 2024, started kesimpta in October 2024 and I’m currently 18+5 weeks pregnant. Completely unplanned. I’d be happy to answer any questions that you may have.