Any mommas here that are or have breastfed? Do you feel like sjogren's syndrome affected your supply?

69 Answers

bigler.esther
Answered 10 months ago    reply

Yep

r_romero86
Answered 10 months ago    reply

Did you have days your supply would dip? Even tho you did nothing different. But it just so happened to be you were experiencing eye and mouth dryness & in other places

bigler.esther
Answered 10 months ago    reply

I had almost no milk. I took supplements and still would get MAYBE 1-2 oz a day :-(

r_romero86
Answered 10 months ago    reply

I brought this up to my MFM dr during pregnancy but she said she didn’t know of the 2 being connected.

bigler.esther
Answered 10 months ago    reply

They NEVER know :-/


exultant.pei
Answered 10 months ago    reply

I actually had a high supply, especially during the first 6 months to a year. I’m still BFing my 2.5 year old and feel like I have little milk now, but that may be due to her age and I have hormone issues, too.

exultant.pei
Answered 10 months ago    reply

Also, I don’t feed as often now.


muhammad.aurelia
Answered 10 months ago    reply

Breastfed all 10 of mine. Only had supply issues with 1. Diagnosed for 7 of them.

bigler.esther
Answered 10 months ago    reply

10 kids?! God bless you woman! 2 drive me absolutely insane!


butt_stupid
Answered 10 months ago    reply

I felt like it did but with the right support you CAN do it! I successfully breastfed without supplementing with formula to 2 yrs with my 4th baby! The rest didn’t go so well. But I cannot stress how important the RIGHT support can help you achieve the goal


haynie
Answered 10 months ago    reply

I have. I believe it affected my supply. I’ll do a lot of extras to boost my supply with the next baby. My naturopathic doc said I could get into a prescription too


timelyhartzell
Answered 10 months ago    reply

I did and still am. I had an oversupply until My son was 6 months and I got pregnant again.. he’s almost 13 months now and supply has dropped drastically. That’s due to pregnancy hormones not Sjogrens, though. Early on, I had an weird aversion to drinking much of anything and I still made plenty of milk. This disease is funny. Never know how it’ll affect each individual!


k.rosaura73
Answered 10 months ago    reply

I did with both of mine. I still am currently nursing my 2nd. Didn’t affect my supply at all. Everyone is different but it is worth it to try!


l_herlinda
Answered 10 months ago

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l_herlinda
Answered 10 months ago    reply

I tend to have an oversupply where occasionally I have to pump while the baby is sleep to give me relief. This was about 17oz without completely emptying one breast and he's breast only except for when I'm at work.

butt_stupid
Answered 10 months ago    reply

Yay!

gratified.sandal76
Answered 10 months ago    reply

herlinda what a beautiful baby boy precious

r_romero86
Answered 10 months ago    reply

herlinda what a cutie!!

l_herlinda
Answered 10 months ago    reply

Thank you ladies!

abandonedkunkel
Answered 10 months ago    reply

This is amazing!!

Gretchen
Answered 10 months ago    reply

I am so jealous of your supply!!!! I pump about 3-4 oz each time but nurse more than I pump.


butt_stupid
Answered 10 months ago    reply

So happy to see so many moms with sjogren's syndrome breastfeed


fritts70
Answered 10 months ago    reply

I couldn’t produce.. tried and tried. Just hardly anything. Never thought that sjogren's syndrome could have affected things. Possible.

lrossi
Answered 10 months ago    reply

Me too

hurried_canoodle72
Answered 10 months ago    reply

Same


excited.perron
Answered 10 months ago    reply

The nurse at the hospital said I could have an issue but it was never a problem for me and had an oversupply. I think that PCOS is another one that can cause issues with breast feeding. I exclusively pumped for about a year for both my boys.

excited.perron
Answered 10 months ago    reply

I recommend drinking lots of fluid, make lactation cookies, eat oatmeal, and I did use fenugreek a few times when I was sick because my supply dropped. They do have a tea but unsure what that would be like.

r_romero86
Answered 10 months ago    reply

perron yea I drink 1/2 my body weight in ounces(water, limited sugary drinks) I also have an oatmeal, flax seed, with cononut almond milk in the mornings. I was also taking Brewers yeast( tho I didn’t notice a difference) i mean I do produce. But I’m just a “just enougher” maybe I should get my prolactin levels checked...? Also along with sjogren's syndrome I have lupus...

excited.perron
Answered 10 months ago    reply

Romona Do you only nurse
Or pump too?

r_romero86
Answered 10 months ago    reply

Renèe is my daughters middle name too. She’s my Eliana Renèe

excited.perron
Answered 10 months ago    reply

Romona she is beautiful!

r_romero86
Answered 10 months ago    reply

Pump. My let down is slow and she gets frustrated and doesn’t wanna deal with my slow flow lol but when I pump I mostly power pump. In the mornings I can get 8oz up to 13 oz on a good day! But then through out the day I get some sessions of 4-5 oz...

r_romero86
Answered 10 months ago    reply

Thank you!

excited.perron
Answered 10 months ago    reply

I also want to add is the one thing I do have is bigger breast and exclusively pumped because my boys had trouble with latching. I ordered the biggest flange for my Medela pump and definitely had more output with it.


slocum
Answered 10 months ago    reply

ATTN: If you have Raynaud's, it will effect your supply! There is a super cheap med called Nifedipine that will fix this right up! American doctors never think of this, but it is standard in Canada.

timelyhartzell
Answered 10 months ago    reply

That’s awesome that there’s an easy fix for this! Great info. I have terrible terrible Raynauds. Fortunately, it didn’t affect my supply at all.

r_romero86
Answered 10 months ago    reply

Is that like Domperidone? I’ve heard of and I’m very tempered to try it

pipkin
Answered 10 months ago    reply

it can also affect your blood pressure so it’s not a quick fix, please do not take that medication without a doctors approval


haynie
Answered 10 months ago    reply

I’m trying to change my lifestyle to put my Sjögren’s into remission when I attempt for baby #2. In hopes of more milk supply and more energy to care for the baby. So far, I’m doing great with my plan

lrossi
Answered 10 months ago    reply

Me too!!

haynie
Answered 10 months ago    reply

letha what are you doing for stress? And the mental aspect of having a chronic illness?

lrossi
Answered 10 months ago    reply

Haynie it’s SO hard!! I feel like no one in the house really understands, so I try not to focus on me and focus on the task at hand. That helps. My doctor also prescribed me a drug that helps with the pain and is an antidepressant. I can’t take them right now because I’m on a six day course of steroids for a super bad flare up.

Diet and supplements helps a lot. Taking the time to rest when it’s offered. Trying not to punish my husband because I’m jealous of his normal body.

I started going back to church too. Having different types of support helps


maharricki
Answered 10 months ago    reply

I only produced on one side. The side that didn't have milk is the side I have issues with.. joint pain, hip, knee, heal pain all in one side as well as numb hands and that was the side I could never get more then 10ml even when the other side was producing 6oz.. still nursing at 2.5 all from one side..


rupe67
Answered 10 months ago    reply

I have breastfeed my 3 children for 6-12month, no problems...


coyle.sorrowful
Answered 10 months ago    reply

I could not breast feed. I did not produce enough milk. Later on, I was tested and my progesterone level was very very low.


Jina.C
Answered 10 months ago    reply

No problem with milk supply and we are still nursing at 2 years and 5 months! I was just diagnosed but now that I look back I’ve had symptoms of sjogren's syndrome for at least 3-4 years.


WinkleDelmy75
Answered 10 months ago    reply

I had an issue and a lactation consultant told me about this stuff I bought at a health food store. Took it and it really helped. Side affect is you smell like pancake syrup. I can't remember the name of it though.

WinkleDelmy75
Answered 10 months ago    reply

Fenugreek. That's it.


sbales
Answered 10 months ago    reply

Breastfed two babies!


lind_h
Answered 10 months ago

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nakisha_79
Answered 10 months ago    reply

No I’m exclusively pumping for my baby right now and I make more milk then she needs. I have a 3 year old who nursed until 2 1/2.


newhouse.79
Answered 10 months ago    reply

My Sjögrens was Dormant during the time I nursed. I had two son and nursed each for two years. I was without Sjögrens for approximately 10 years.


crummy_egad
Answered 10 months ago    reply

I did with my first, I had serious supply issues and he was failure to thrive, Im currently still feeding my 2 year old, who's never had formula, from just 1 side, he never latched to the other. I cant pump a drop though


rashid81
Answered 10 months ago    reply

I am currently breastfeeding my 13 month old. I was able to exclusively BF her when she was an infant. I have four other children, and have always made just enough for them. I say just enough, because when I pump I hardly get anything, but it wasn’t a concern because my babies seemed full and continued to grow. I just don’t make a lot extra. Also, I nurse on demand, and basically let nurse whenever she wants, which is often.


giron
Answered 10 months ago    reply

I was unable to breastfeed both of my kiddos. I was producing little to no milk


elviramalek
Answered 10 months ago    reply

I actually couldn't breastfeed but I tried. I say give it a shot and hope for the best.


elizabeth_bachmann
Answered 10 months ago

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jollywalrus93
Answered 10 months ago    reply

No issues at all


devore83
Answered 10 months ago    reply

Yes I had to supplement. That was 35 yrs ago. Did not know at the time that I had sjogren's syndrome


pennysmitherman1
Answered 10 months ago    reply

Yes, I did. No, I had abundant supply. In fact, my daughter is 10 and just talking about it causes production. Mind that I am super dehydrated.

placid.Foxworth
Answered 10 months ago    reply

hi honey I haven't been diagnosed,i have a swollen submandibular gland been there quite a while(I think) and felt poorly for a Pei time now,im in the middle of being diagnosed with whatever is up with me,i currently breast feed my 18month old (yes I know hes older then most breastfed babies) but I enjoy it..although I find I get very dehydrated breast feeding specially at night...is this something you suffer with?


almodovar
Answered 10 months ago    reply

I’m currently nursing my 2.5 year old AND my 6 day old. No supply issues for me.


mei_h
Answered 10 months ago    reply

I breastfed twins for 14 months and a singleton for 16 months. Never had issues with supply


ilana.s
Answered 10 months ago    reply

I breastfed all 3 of mine with no issues.


ailana
Answered 10 months ago    reply

I bf my lo until he was 2yo. He has a disease that makes him allergic to most foods. He was ebf until around 16 months (no solids what so ever) on my diet of 7 foods. My supply dipped with the stress of his disease and food eliminations, but it always recovered.
I was hoping my sjogren's syndrome wouldnt be as bad once weaned, but I haven’t seen a difference.


Gretchen
Answered 10 months ago    reply

I’ve made it 3.5 months so far and I usually pump about 3-4 oz each time if I don’t have him latch. I am actually struggling with my son gaining enough weight so idk if my supply is not enough for him or “fatty” enough for him! I feel like he eats nonstop though.

exultant.pei
Answered 10 months ago    reply

They do eat nonstop at that age, for calories and comfort. Also, I had an oversupply and would not respond to a hospital grade pump. I’m just saying from experience that the amount you pump might not be indicative of what your baby is getting because I got drops from a pump and definitely had a ton of milk. My 2.5 year old is in the 5 percentile for weight, but is healthy, so not all breastfed babies are chunky.

Gretchen
Answered 10 months ago    reply

He’s my 4th baby and the only one I’ve made it this Pei with! I’m so glad I’ve been able to BF this time! He was born with complete heart block (which is how I found out about my sjogren's syndrome). He’s gaining weight, but not as much as his cardiologist would like. She suggested to exclusively pump so that I can monitor how much he eats each feeding, I’m not a fan of that....that’s how I lost my supply with my other kids


polito_m
Answered 10 months ago    reply

I had like no breast milk, I only breast fed for like 2 weeks.


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