Hi its me again, full of questions at the moment.
I wondered if anyone had any experience of discussing pregnancy with your rheumatology team?
I have lupus and RA, and had a very severe case of Hyperemesis gravidarum in my first pregnancy, my Lupus and RA was found post partum.
Now, I am thinking about a future pregnancy and wanted to understand my options and if anyone has had experience of planning a pregnancy with the support of your rheumatology team
Thanks in advance
A
Hiya,
I had both my daughters whilst having RA and am an older mother. My first pregnancy went well and I enjoyed remission which is pretty common, sadly my second pregnancy I flared throughout and my RA became out of control. On both pregnancies I stopped my meds and only took steroids, this was fine with my 4 year old but with my 18 month old it really wasn’t and in hindsight I should have listened to my consultant. What meds are you on at the moment? I switched rheumatology teams from my first to my second pregnancy, both times I did feel I had to take control of my own situation if that makes sense. My consultant did not speak to my rheumatologist and I had to be proactive and made sure I was on top of everything. I had extra scans but that was more down to age rather than RA. I won’t lie and say it isn’t without its issues but like I said my first pregnancy was great, either way I wouldn’t change a thing as my girls were worth it all and I’d do it again in a heartbeat! In terms of planning it with my rheumatologist, I told them I was trying and they put me on sulfalasine and then with my second pregnancy I was on aziathioprine, that’s as far as they got involved to be honest, just selecting meds that were safe for me to conceive on.
Yes I had another child after discovering RA after my first pregnancy. The RA team were supportive in helping me to be on medication that was safe in pregnancy. However as I had not yet found a medication that helped, which did not give me dangerous side effects, I decided to stop them to have the baby and continue my search for the right medication after having the baby. I was able to be on a low dose of prednisolone for the middle of the pregnancy. I was supported by a Consultant Obstetrician due to being a higher risk due to having RA and my midwife was amazing. I ended up with a water birth, which is what I had wanted in my first pregnancy. I needed prednisolone a week after the birth but was allowed to breast feed on this.
I hope this information helps you. Good luck with everything.
Thank you for sharing both your stories with me. My daughter was born and then I was diagnosed. I had a really hard birth and emergency C-section. She just turned 2 and is so wonderful, but I feel like another pregnancy is going to be so complicated to coordinate care -wise. Just feel a bit daunted before I even start.
I am currently on several medications that I know are not safe for pregnancy. I will talk to my rheumatologist as I know you need to be off MTX for a period of time before trying to conceive. I think its going to take a while to get to a place where it'll be possible.
Were both your rheumatologist and obstetrician in the same hospital?
I had emergency c sections with both, my first was a bit more straight forward she just wouldn’t come out! My recovery wasn’t great though and I had to have further surgery post partum as I didn’t heal properly. My second was a bit different, she was 5 weeks early and wasn’t very well and in intensive care, however within about 48 hours I would not have even known I’d had an emergency c section as it healed so well and so quickly. Please don’t feel daunted, yes there are some hurdles but there can be for anyone, RA or not. Hardly any of my friends have had completely trouble free pregnancies or births and have no health issues. I would give yourself as much time to get on the right meds. Re my obstetrician and rheumatologist different hospitals for my first, same hospital for my second but as I said they didn’t talk at all, I liaised between them. My second pregnancy I really had to keep on top as my RA flared so badly. Good luck and as you already know it’s so worth it! My girls are just everything! X
Yes, but the advice I was given would be different now, 25 years on.
Yes I had my daughter almost 2 years ago and was out on Benepali to conceive / throughout pregnancy / birth / breastfeeding and all was well. I was under the consultant led team. She was preterm (6 weeks early)but all ok in the end. Was well looked after for sure.
We want to try again and the Benepali stopped working so have been moved to Cimzia. It’s not really kicked in yet so still can’t start trying but hopefully in a few weeks 🤞🏼
Hi Kerry, this is quite a delayed. I am about to start taking benepali in the next couple of weeks and assume I will still be on it when we start trying in January 2022. I have been on methotrexate for a little over a year. Planing to stop that in June and the have 6-7 off it so it can fully leave my system prior to trying.
Did you have any issues with benepali when you were pregnant?
Thanks for sharing your experience. It's nice to know I'm not alone.
A x
No it was all fine. I had hip issues towards the end but they put that down to ‘normal’ pregnancy pains rather than my AS. Daughter was born early at 34+5 but we’ll never know why and if anything contributed to that. She was out of hospital after 9 days and and been happy and healthy ever since. I could BF safely on it too which was good. I hope it all goes well!
Hi, I am of child bearing age so have refused methotrexate. The RHeum team are rubbish at my local but I did manage to get a referral to the early pregnancy team. They had a long chat about planning to get pregnant and the obstacles given I have RA. They did bloods abs found I had deficiencies in Vitamin B12 and D so put me on supplements. They also assured me that when I did get pregnant. They would be there. It was amazing.
The only problem I have now is getting my RA under control so I can ..... but unfortunately the Rheum team are not that great
I was referred to the early pregnancy unit even though I was not pregnant to discuss how they would support me if I did get pregnant
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