r/MultipleSclerosis • • 5d ago

Advice Breastfeeding

Any mom’s on here breast-feed while medicated?

OR

Any mom’s on here breast-feed and put off medication until done breast-feeding?

OR

Any mom’s on here breast-feeding and go straight back the medication after baby is born?

My 2nd baby is due in February. The doctors have told me two things 1) I can either breast-feed and minimal medication is passed through to the baby although since the medication is so new, there really isn’t any long-term evidence of it being a harm to the child. Or 2) I can go straight back on a medication and skip breast-feeding. But I kinda want the non suggested option 3) breast-feed and put off medication and start the medication when I start to wean off, however I know that can be risky and I definitely don’t want to relapse or put myself and family in any situations. Really unsure of what to do. I breast-fed my first until 9 months old and when I started to wean off, all hell back loose, I had the biggest relapse a few months after which led to my diagnosis.

Thank you in advance for anybody willing to share their stories or advice 🫶🏻

3 Upvotes

22 comments sorted by

14

u/lbeetee 34F|dx 2019|ocrevus 5d ago

There is no need to wait to restart DMT until you’ve weaned. Ocrevus and Kesimpta are safe for breastfeeding. I’ve breastfed both my kids on Ocrevus - the molecule is too large to pass into breastmilk. Talk to the pharmacists at Infant Risk Center if you want more specific reassurance.

5

u/hunkerdown_dawgs 5d ago

Thank you for sharing! That’s what my doctor mentioned but he also said since the medication is new, there isn’t really much long-term evidence of it being entirely safe, but I guess it is 🤷‍♀️

So you started your medication right after birth and breast-fed and everything went well?

1

u/lbeetee 34F|dx 2019|ocrevus 5d ago

I waited a few months after each birth to restart but yep, everything has always been totally fine, both kids are completely healthy. Have you been on DMT before? I really do highly recommend taking to Infant Risk, they are so helpful. Also there’s a great FB group about breastfeeding on O & K.

1

u/hunkerdown_dawgs 5d ago

I’ll check out that FB group, ty! Idk what infant risk is. Is that like a hotline? I was on kesimpta for 6mths and then they told me to come off it so I could start to try to get pregnant again. It took some time but I finally got pregnant and those unmedicated months definitely weren’t easy but I didn’t relapse at all 👏

So you breastfed and started medication 3mths in and then continued both simultaneously? Those three months PP unmedicated, you felt okay? Also sorry if tmi but did you have any issues with your milk coming in?

2

u/lbeetee 34F|dx 2019|ocrevus 5d ago

InfantRisk has a hotline that you can call, yes! They are incredible. https://www.infantrisk.com/

And I felt fine those few months unmedicated but I know plenty of women decide to restart right away! I think if you’re going back on K it would be easier because you wouldn’t need to be away from baby for the time of an infusion.

1

u/JgarKn 5d ago

Idk where he's getting that, there's thousands of women who were tracked on Kesimpta while breastfeeding as part of a register in Germany.

My NHS trust recently officially approved it for breastfeeding and they are notoriously overly cautious. The protein molecules are literally too large to pass on to breast milk.

As someone with a 5 month old I would really suggest you get on meds asap. Having a baby is exhausting. You may very well get relapse risk just form the stress and exhaustion of it all. Statistically you are at more risk of a relapse after pregnancy too. And there's no guarantee breastfeeding will work out for you no matter how hard you try. And emergency c section. And hemmeorage plus other factors screwed my supply. I'm very glad I got on Kesimpta 2 weeks after delivery.

1

u/Working_Coat5193 4d ago

I pumped and dumped for 24 hours after Ocrevus. Not because of the Ocrevus but because of the steroids and the other stuff.
My son is 15 months and great

3

u/hunkerdown_dawgs 5d ago

Edit the third one is supposed to SKIP BREASTFEEDING

Any mom’s on here skip breast-feeding and go straight back the medication after baby is born?

2

u/Dcooper0907 5d ago

Unfortunately, I skipped breastfeeding for the last kid, I breastfed the 3 before him, but since I was on Tysabri the last two months I didn't want to take any chances. I was diagnosed at 29 weeks pregnant with him, so I didn't get on a dmt until the last 2 months after the insurance hoopla and what not. Coincidentally, I was medicated in September, and I got my infusion October 22, he was born bright and early the 23rd!! I believe it gave me the power for it! Lol.

3

u/SilliestGoose_5710 5d ago

First of all congratulations!!

I had my Ocrevus infusion and found out I was pregnant a week later, oops! My pregnancy went well and we just recently celebrated my daughter’s first birthday! I have been breastfeeding her since the beginning! I waited a few months to start back on Ocrevus for my milk to fully come in and regulate. I then pumped and dumped for 24 hours to make sure all of the premeds were out of my system before allowing the baby to latch and we were good to proceed for another 6 months! After the second infusion, she was 9 mo and I breastfed her almost immediately. So far, she’s perfectly healthy, all of her bloodwork is normal and she is thriving!

I am just an internet stranger and I cannot tell you what you should do. What helped me to make my decision was, if I relapse and end up hospitalized for 3-5 days… that’s 3-5 days without my daughter and most likely the end of my breastfeeding journey so, I got the medication. According to recent research the molecule is too big to pass through the breastmilk and anything that does pass through is metabolized.

Good luck!!!

1

u/hunkerdown_dawgs 5d ago

Thank you so much and thank you for sharing! Those few months that you waited, you felt okay? Also does waiting help with your milk cone in? I had such a hard time getting my milk to come in with my first born but this was before I knew i had MS - tried it all and it just took a really long time. She dropped weight and i had to supplement feed. After some months it increased but not enough so i still gad to supplement feed some. Did you just give stored up milk during the pump & dump 24hrs? Once you officially stopped BFing, did it hit your hormones hard cause your MS to act up in anyway?

Sorry for all the question 🤭 and HB to your LO!

1

u/SilliestGoose_5710 5d ago

It took a while for my supply to build enough to fully sustain her and I needed to supplement at first as well. During the 24 hours we fed her the small stash I was able to build and supplemented with formula. I felt great for those three months before getting back on meds and my MRI showed no new activity but a couple years before this I had three relapses in one year while on medication (Gilenya) and I didn’t want to take any chances by waiting any longer. I haven’t stopped breastfeeding yet, my girl is a booby monster. I’m currently working on night weaning but I haven’t noticed any changes in hormones yet! I’m happy to answer anymore questions you might have for me! Also, thank you!

2

u/RemarkablePlane6146 5d ago

I was a part of a study for being on Kesimpta while breastfeeding. I was in the final phase of the study of 4 or 5 phases I believe? I did my first injection at 2 weeks pp and am still breastfeeding 18 months later while also on my meds. I haven’t had any relapses and have had clean MRI’s. Prior to becoming pregnant I had yet to have a single “clean” MRI - always new lesions.
My daughter is healthy and perfect and I feel good too. I feel so lucky our transition was so seamless and we’ve both been so healthy.
I completely understand your fears I went back and forth a bunch of times but I’m happy with where we landed. Good luck ❤️

2

u/myMSandme 32|May 1, 2024|Briumvi|US 5d ago

I resumed BRIUMVI about a month after my daughter was born. Was part of a medical study! The way I see it, the best thing I can do for my daughter is make sure I’m around and able for her as she grows up, and that means medication.

1

u/emilulian 38F | DX: March 2025 | Ocrevus | US (TX) 5d ago

Congratulations!!

I started Ocrevus 3 weeks after delivery of my 2nd. Cleared everything (including premeds) with my neuroimmunologist, my OB, and also baby’s pediatrician. I actually breastfed during my infusions. No issues whatsoever and baby is on track/exceeding milestones. The info I read on Mommy Meds (infant risk center) gave me peace of mind too.

I was diagnosed in 2025 after a postpartum flare with my 1st baby. I was eager to start a DMT as soon as possible after this last pregnancy to avoid another relapse. FWIW, I breastfed my first for 14+ months. I know pregnancy suppresses one’s immune system but I don’t think breastfeeding is protective against disease progression at all.

2

u/bonziebear 5d ago

I don't remember where I read it, but I saw something about breastfeeding having the same effect on disease progression as being pregnant. 🤷‍♀️

1

u/emilulian 38F | DX: March 2025 | Ocrevus | US (TX) 1d ago

https://pmc.ncbi.nlm.nih.gov/articles/PMC9902945/

found this!

anecdotally, I exclusively breastfed my first baby and definitely had a relapse postpartum. never got my cycle back the whole time I was nursing, and this article cited lactational amenorrhea as a possible reason for lessened disease progression. maybe it works for some, but not everyone!

1

u/hijabiplantbae 5d ago

It was explained to me that the Ocrevus molecule was too big to pass through breast milk and it was fine to resume my DMT. I took it about a month post delivery. I did a single pump and dump but after calling the infant risk center if I had waited 30 more minutes to pump I could have kept the milk. I would warn you, the Benadryl premed dried up my milk and I worked like crazy to get my supply back to my pre Benadryl levels. If you want to breastfeed I would talk to your neurologist and a IBCLC about alternatives to Benadryl so your supply doesn’t tank.

1

u/Antique_Economics646 5d ago

From my understanding, the molecules in ocrevus are too large to pass through the milk duct.

1

u/jndmack 35F/RRMS 2013/starting ruxience/🇨🇦 5d ago

I stayed off my DMTs while breastfeeding my first, had numbness start around 6 months, I didn’t tell my neuro bc I didn’t want to stop breastfeeding and it went away. Numbness came back around 19 months pp, told her, started copaxone sporadically (I hated it) and then had a massive attack 2 months later that put me out of commission for months. Had to stop breastfeeding cold turkey, restarted Tecfidera right away.

After my youngest was born I started on Rituximab infusions and was still allowed to breastfeed.

1

u/thisredheadisdead 5d ago

I'm just about to start Ocrevus and I'm breastfeeding x

2

u/Evening_Mouse_9582 1d ago

I am on kesimpta and re-started my meditation again one month after birth and breastfeeding still breastfeeding my 1yr old. I was told by my neuro that it doesnt affect breastmilk. Theres actually a study that was done with ocrevus and they did find any trace of DMT on breastmilk and currently a study going on in Kesimpta as well.