Ra and bfeeding

[lidiab]

Hi everyone,please is there anyone who breast feed or is with the illness.

My 1st ra flared up in November but didn't got diagnosis until January,.Through out all this crazyness (and not being able to make up bottles etc after seeing very unsupportive Rheumy )I'm still breastfeeding and yes still struggling to make up the bottles 4monts later doctor pushing and pushing to put me on mtx but need to stop completely bf.My little one is so not ready,not mentioning me...I can't cope, we have tried everything but usually I'm giving up when I'm home alone and not having anyone to help.hubby is amazing and does the baby calming/rocking to sleep when home from work but I simply do not have strainght in my hands for around 5h before steroids kick in,so easiest and pain free is to just breastfed as I can't open things or do all the shibang with bottle feeding...

I feel very lonely in all this as my rheumy do not understand and keeps pushing to stop bf.I simply am failing to do so.What are you're view or perhaps expiriance in situation like that.thank you

[wiliby]

Hello, this is short but I will reply further tomorrow. Same happend to me, baby 3 months old when diagnosed, can you ring health visitor first thing in morning? Explain everything and ask if there is any help, my gp arranged health visitor but I think s h e thought I had post natal depression, I never but felt how you must be. They arranged someone to come in each morning, she would make sure baby was changed, helped me move around, made breakfast and that I had enough bottles for the day.

Surprising my daughter loved changing to bottle and slept much better. It also helped being able to have stronger pain relief then. Your health visitor may encourage you to keep breastfeeding however you need to do what is right for you. Given the choice myself I would not have stopped breast feeding either but like you, the pain ect was just too much. I hope this won't be the case for you but my flare became a lot worse within 48 hours of stopping. I was on waiting list for first as appointment so didn't have access to steroids at that point.

I feel so bad for you right now, have you thought of ringing nras helpline also?

Please take care and ask for support x

So much for being short!

P.S., im much better now, once I started treatment everything settled

[farm123]

I can sympathise with you. My youngest was born 7.5 weeks early therefore my milk had not come in but persevered and after 10 days was breastfeeding him. Unfortunately over the next few months my RD returned and it meant I had to stop breastfeeding around 3 months to resume meds. It is a hard decision as I had fed the other 3 for at least 6 months each.

It is emotionally hard to swap onto a bottle - many say to get someone else to give them the bottle to get them used to it but mine would not let anyone else feed him so just had to persevere - not easy. There are quite a few different shapes of bottles so it may be worth trying them in your hands in a shop to find one that is easiest for you.

In the meantime it will be hard but once on the meds (not sure whether extra steroids could be given to cover until meds kick in) your body should improve which means you can care for you little one easier.

Could you OH prepare bottles for you before leaving for work so you only have to warm them up. I must admit there was a more settled pattern with feeding when I changed to the bottle.

For me as I was already on RD meds before and knew the control they could give I knew I had to stop and resume meds.

This disease can also make you feel low so do chat to you health visitor or GP if necessary. Farm

[Ailsa-NRAS Partner NRAS]

Hi there

I can understand how difficult things are for you at the moment as I had bad flares after my daughter was born (a long time ago now!) but sometimes you need to put yourself first in order to be able to cope as well as possible with all aspects of family life so maybe you need to think about how you and your husband could manage bottles so that you can go back onto MTX and get better control of your disease? Why don't you give our Helpline team a call as we can put you in touch with another young mum who has experienced what you are going through who can provide some direct emotional support.

All best wishes

Ailsa

(CEO, NRAS)

[Pands]

Hi I am really sorry to hear you are having such a tough time. I know from my own experience that it is both emotional and physically hard (and painful). I had RA before I had my twins and so I was always aware that I would only get a small 'gap' after giving birth when I would likely feel well enough to breastfeed and my Rheumy was always very blunt and definite that I would flare very soon after birth. I managed - in the end - 8 whole weeks before I had to stop breastfeeding and I sobbed my heart out in the bath the last night. However I literally was unable to pick up my daughters at that point so levering them up to my chest on my own was excruciatingly painful etc.

My Rheumy was able to give me a couple of big steroid shots to tide me over in the 8 weeks and these injections were much more effective in managing the pain and lack of strength than steroid tablets each day. They are not a long term answer but might help you feel more able to make a decision properly instead of feeling forced. How old is your little one?

I felt forced as well but I know that for me and my body it was the right thing to change to formula and for me to go back on methotrexate and Humira. Didn't stop me feeling dreadful though.

Regarding the actual making of the bottles, my lovely husband would make up a load of bottles and I would just leave the remains in the sink until he came home!

[Victoria-NRAS Partner Moderator NRAS]

Hi Lidiab

This is a tricky one, as I know they do not recommend making the bottles up too far in advance of using them, so might not be possible for your hubby to make them up before work. It is worth looking at different bottles, as you may find some easier to hold/undo than others. You may also be able to get something to help you open the bottles. A rubber washing up glove can help sometimes when bottles or jars are hard to open, as it can help with grip.

I don't have RA myself, but found the 'Tommee Tippee Closer to Nature Perfect Prep Machine' very helpful for making up bottles (my little one just turned 1), as it was quick and easy. They are quite expensive but particularly helpful with the night feeds.

I had to switch to bottles quite early on, but found he was fine with it and had the added benefit that I knew how much milk he was getting!

If you can find a way to switch to the bottles, bear in mind that this would mean you could get back on the methotrexate, which in turn might make the bottles etc easier if it improves your RA, as everything must be a real struggle while the RA is poorly controlled.

I hope things improve for you soon.

Victoria

(NRAS Helpline)