My little boy was born 11 weeks ago During pregnancy I had to go back on medication and I took a low dose of Hydroxychloroquine from 16 weeks. When Eric was born I was told I couldn’t take it while breastfeeding. Got a few weeks I wasn’t in too much pain but then it flared up so I went to see the rheumy nurses.
They said there’s nothing I can be on while breastfeeding apart from ibuprofen which I know doesn’t do much. I’ve got another appointment in 2 months time so it seems I have to make a decision by then.
Does anyone have any experience of taking medication while breastfeeding? I’m desperate to keep going as we had such a rough start and we only bailed it about 5 weeks ago. Really hoping someone can give me some hope!
Thanks
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Beckywood89
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Congratulations! I'm sorry I'm unable to help with your query but hope you receive some hopeful news so you can carry on feeding Eric yourself.
Would you post a pic for us? x
Hello and congratulations!!
I think to be honest most drugs for RA are very toxic whilst breastfeeding. I can understand your dilemma. On the one hand wanting to breast feed, but being in pain.
I think if you are really suffering, perhaps it's better to stop breast feeding and get better, so you have energy for your baby?
It's a long time since I breast fed, and I didn't have an inflammatory illness then, so I'm no expert. Someone else might come along who is though.
Wishing you well. Don't beat yourself up if you can't continue to breast fed. Your baby will thrive with your love anyway.
Congratulations !! I have never been in that position, but did have to abruptly stop breast feeding my 3 month old baby when an older sibling was admitted to hospital for a lengthy stay. At the time I was distraught, but she coped better than me.....and at least I knew that I had given her a good start.
The important thing is that you are able to look after him at your best....and if that means a compromise, it might be the best decision for you both.
I do hope you are able to resolve this in a way that's acceptable to you both. Motherhood is for life....I 'm sure your baby will be fine either way, he's obviously well loved, and at the end of the day, that's the really important thing for him....and you.
Hi there and congratulations on your baby! UNICEF publish a huge tome on breastfeeding matters, I have it somewhere as volunteered as a BF counsellor in the past. Will post name if I find it. Worth finding someone who has it - ? Local BCT and counsellor, la Leche league or a lactation consultant- as from memory it covers ways to cope in that situation. Stopping before you are ready is hard, especially when it has been hard won in the first place. I feel for you as you cope with need to balance benefits of BF for baby with fact you need to be healthy yourself to care for him/her. Toxicity of RA drugs is no laughing matter for a newborn so I imagine in some ways the choice will make itself- if you are managing the RA ok in 2 months when you have appointment, you could continue feeding if you don’t need to restart medication, but if you are increasingly unwell, your baby will have had about 5 months of breast milk which is a brilliant start especially with your circumstances.
Parenthood is a marathon not a sprint and it is helpful to care for yourself in a way that helps you keep going in the long run. your love and presence is the underlying need for your baby.
There are milk banks that can provide human milk for exactly your situation- for example, google Hearts milk bank which is run by a wonderful team and will be able to talk with you about your options or put you in touch with someone in your area.
Good luck and sending you wishes for good support around you.
You could also express some milk and freeze it (before meds) if you wanted to. I had to do this when my son was hospitalised. That way baby would get a bit more of your milk for a while. It would take some doing as you are already nursing. Feed on one side, express from the other?
Whatever you decide your little one has had a brilliant start.
Feel for you. 15 years ago my youngest was born 7 weeks premature. I managed to get my milk to 'come in' but after 3 months my disease started to pick up again and had to stop and swap to bottle. My others I had fed until 9, 6 and 8 months so it felt wrong but I had to look after myself as well as the other children who needed me as well. If you can make it to your next appointment you will have done over 4 months which is a very good start for him. Bear in mind that even after that appointment depending on which treatment you decide on (if biologic) there could also be a good few weeks to get the drugs authorised and to you and then time for them to work. If your hands/arms are causing you problems you might want to get help sooner as everything for the baby involves using your hands and he will be getting stronger and heavier. You might be more upset by having to get help to do anything for him than not being able to breastfeed him.
Just to add about expressing while you are not on RA medication, as someone else suggested, this can be very effective if you express from the side you are not feeding from, while you feed your baby on the other. You can also express for a few minutes after a feed and get some supplies that way. I rented/borrowed an excellent pump from the NCT and it may be worth doing this rather than buying as you can ask for a hospital grade pump which will be more efficient at getting more milk. Some pumps you can buy are not very effective and harder work —(especially with painful hands). It’s surprising how quickly you can build up a supply in the freezer and this may help you feel better about what your baby is taking in even if you have to stop due to going back on meds in future months. Hang in there and remember you are being a great mum however you end up juggling all these demands on your body. Having RA with a baby is truly a challenge and I am sure lots of others reading your post on here are cheering you on. Well done for getting this far and take care of both of you.
I’m currently pregnant with twins and have been told hydroxychloroquine is ok to take whilst breastfeeding, I just need to come off sulpasalazine as that isn’t compatible with breastfeeding. Could it be worth getting another opinion? Also what about prednisolone to help?
Congratulations Liz! Twins are great 😁 We have a pair in our brood. Check out TAMBA if you haven’t already, it’s very good. If possible line up as much practical help as you can before they arrive and don’t be afraid to share the load - the first year is still a blur for hubby and I when we try to remember but worth it!
Congratulations on the twins! I nanny a set of twins and they’re such a joy! I’m definitely going to be persistent in asking when I have my next appointment
I breastfed my son until he was 13 months. I had a very supportive Rheumatologist and she said the small risk of things passing into the milk was far less than the benefits of breast milk.
I had intravenous steroids when he was a few weeks old. I took sulphasalazine through out. (My Rheumatologist did some research and said that the only adverse thing she could fine reported was that some babies had a developed a rash which went away a couple of days after the mother stopped taking it).
I also had steroid injections as necessary. I was under the impression that hydroxychloroquine was also suitable for breastfeeding but I can’t tolerate it (it gives me very bad stomach cramps) so not 100% sure of this.
I used to be on sulfasalazine and hydroxychloroquine so I’m definitely going to ask about them. Steroid injections unfortunately don’t last long enough to make them worth while
Hi, I am also in a similar position. My daughter is 12 weeks out and so far I have been managing on 7mg and prednisone. I am breastfeeding and bottle feeding as sadly I havent been producing enough milk.
My RA is slowly coming back so my rheumatologist wants to get me back on anti TNF drugs asap. I was previously on ebbrel but stopped while I was pregnant and I do not want to restart it as I had some side effects so they have oder ed my cimzia. It arrives in 4 weeks. They have told me it is extremely safe on breastfeeding. The safest anti TNF drug I believe bit I am still apprehensive as because the drugs havent been around that long we don't really know if breastfeeding whilst taking them could cause any long term probems. I am heartbroken at the thought of potentially stopped breast feeding although so I really do unserst and how you feel. I nurse my daughter to sleep atm so I would feel awful taking that away from her. ..but I do know in the long run the most important thing is for me to be able to play with her and pick her up etc. It really is such a hard decision.
Have you ever been on Anti TNF medications? They are the only drugs that have contolled my RA so maybe worth researching Cimzia and making your own mind up about it. You have to pass a disease activity score to quplift for them but if you have a good rheumatologist I'm sure you could get them.
Also, as previoualy suggest...pednisolone. obviously not a long term solutiin but they are very safe and work wonders for inflammation. Maybe you could take them just until you are ready to stop breastfeeding?
Really hope you come up with an arrangement you are happy with.
Thanks for replying I was on cimzia when I was trying to conceive but it definitely wasn’t as effective as my previous medication had been. And prednisolone only last a week max and they will only let me have them every 10-12 weeks so it’s a bit pointless really.
Realistically I might have to stop. I hadn’t realised how emotionally attached I was to breastfeeding! Although I have mastitis at the moment so I wouldn’t miss that!
Apologies for all the spelling errors! Bloody autocorrect. ..hope you can make sense of it x
It has been many years since I went through the gut retching dilemma of being advised not to breastfeed because of my medication. I feared that I wouldn't be able to bond with my daughter. Guess what I learnt? All that guilt that I placed on myself was just a waste of time. The bond between a mother & child is so strong whether you breast feed or not. The love and care you give your son is what forms your bond.
Think of it this way, you have to give up breastfeeding because you love Eric so much and you know It is what is best for him.
In a few weeks you will wonder why you spent so much time agonizing over how to feed your baby. Eric will thrive & your pain levels will come down because of the medication. A win win situation.
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During pregnancy I had to go back on medication and I took a low dose of Hydroxychloroquine from 16 weeks. When Eric was born I was told I couldn’t take it while breastfeeding. Got a few weeks I wasn’t in too much pain but then it flared up so I went to see the rheumy nurses. 
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