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Breastfeeding with Lupus and Sjogrens

Just needing some advice and reassurance as have a 6 week old baby and really struggling to breastfeed due to painful nipples/areola and time pressure to express (low volumes 40-60ml each time). Having to give formula top ups to 120ml so feel baby is getting inadequate feed during breastfeeding.

Also had a flare up of hand joint pains/fatigue/more dry eyes with not sleeping/eczema with hand washing on top of general 'baby tiredness' so struggling to open bottle tops and carry out fine movements/daily routine.

Also had very poor care in and after labour in a tertiary specialist hospital as staff too busy to provide basic care so still coming to terms with this too. Frustrating!

Am on Hydroxychloroquine and not aware it affects breastfeeding.

Any helpful advice would be greatly appreciated as finding midwives/health visitor too pushy and not taking my conditions into account and just keep telling me to breastfeed and express more to produce more milk.

Anyone who has had similar experiences and has some advice/anecdotes would be great to hear from you.

Many thanks.

5 Replies

Probably not the advice you want but I'd stop trying. I choose not to breast feed due to my lupus 7 months ago so that hubby could do some of the feeds & allow me to rest. And by the sounds if it you need to rest (as much as you can with a baby)

Sorry I'm not much help but hope you feel better soon



Thanks for your reply AlisonM. I think that I will have to reside myself to stop breastfeeding as it's taking too much a toll on my health. I am stubborn so it does not help me trying to push myself on. I really try not to let 'the condition' take over but I suppose it is time to admit when it's getting too much.


Hi, congratulations on your new addition :-)

I just thought I'd do my best to try to offer some support. I've breast fed all my 3 girls, there's a 10 year age gap between my first and last daughter. I'm just wondering if this is your first child? If so I just want to say that nobody prepares you for how difficult and tiring breast feeding can be, I thought with my first it would be almost a natural thing! The reality was it didn't come that easily - my daughter was a month premature also. However I did persevere, I reckon it took me about 3 months to learn and get us both comfortable with it, I also expressed milk off of both boobs after every feed. It is extremely tiring having a baby and it's also tiring feeding, you need to drink and eat loads. I breastfed on demand which almost seemed constant because my daughter was prem, everything else had to just wait - that's kinda when you need your mum round doing your house work etc etc so you can just take the time without worrying about everything else. It's good that you are topping up with a bottle because mine wouldn't take a bottle at all - even with expressed milk - they were all booby monsters!! I have to say I was determined. It's still early days if your baby is 6 weeks old for both of you. I don't think there is enough support for new mums and some of the health workers are rubbish. My youngest daughter is now 6 and my health at this time wasn't as good nor was I as young as with my elder two. That said you need to take care of you also. It wasn't easy for me to feed as they would only latch on to one of my boobs! I was told I couldn't just keep feeding off of one boob, I didn't see why not so just pumped milk off the other! Sore cracked nipples can be extremely painful - I bought plastic Mexican hat type things to go over when they were bad and actually it helped the latching on process sometimes! I want to say don't despair and follow your heart, also take care of you and know ur limits, drink gallons eat well, but top ur baby up with formula if u need. Most of all don't beat yourself up - you've already given your baby 6 weeks of your milk, in the early days of having a baby the days and nights all seem to roll into one! But it does get easier.....until they turn into teens!!! All my best wishes xx Jo


I breast feed both my two for over a year! The first 6-8 weeks were extremely painful. It's like have a new pair of shoes that cause the worst blisters, but once they and I had learnt how to do it it was a wonderful experience - like a comfortable pair of loveable slippers. It's not for everyone whether you have lupus or not! The best thing I think is to do what's best for you, as in turn it will make you happier and that will lead to a happier baby! Good luck.


I've had four babies and breastfed them all, youngest until she was 2 and a half. I am also a trained La Leche counsellor.

If you are basing the amount your baby is getting on how much you can express, rest assured that babies are far more efficient at "milking" you than any other method. But your supply will increase the more the baby demands it. Unfortunately topping up will send a message to your body that it doesn't need to produce LOTS (and it does).

I would suggest you make the most of this new baby period, and if possible get your mum or a friend round to help you, while you tuck yourself into bed with your baby and let baby feed and suckle as much as they want while you get waited on hand and foot! Best foods to increase your milk are carbs. Loads of jacket potatoes with beans etc etc and lots and lots of drink, water or orange squash are best (squash increases potassium levels in you which is helpful).

I don't know where you live, but there may be a breastfeeding support group near you. A trained counsellor could help you. Breastfeeding is tricky, but if you have the right position it shouldn't hurt. Us lupies are inclined to develop thrush though, so please take a look at your nipples. If the skin is shiny or white I suspect you and baby may need some nystaform - cream for you and drops for the baby.

If you don't have thrush try a new feeding position. Post birth I coped best with laying on my side with baby laying tucked into my arm and latched on there. Hold baby, bring their nose to the nipple, tickle their lip with it and baby's head will rock back to get it in their mouth properly. If you have a good latch you will hear the baby swallowing and their cheeks will stay nice and plump while they suck and their bottom jaw moves up and down.

The only way to check if your baby is getting enough from you really is to check the number of wet nappies. Also hungry babies are often a bit less alert than they should be. If baby is alert and weeing OK, you are doing well.

Breastfeeding is exhausting, as is having a new baby, for anyone, but it is harder for us. However, breastfeeding is the best way to ensure you get the physical sit down/lay down time you need to recover! Make the most of it.

If you want any other help, please check out

If I can help more Im glad to try. But at the end of the day if it is too much for you, rest assured you have done your best for your baby, as every day of being breastfed is a bonus, and you've done really well getting this far. When breastfeeding was hard for me I kept telling myself "one more day and then I'll think again", and some how I got on further!

Congratulations on your baby too :-)

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