Lupus symptoms after pregnancy and breastfeeding experiences

[AbbieLacey]

Hello,I'm 6 months pregnant with my third child and very close to being diagnosed with lupus. Only just had my first rheumatology appointment a couple of days ago so im very new to this. I'm very worried about the possible medication I may have to take when my baby is born. I am also concerned how this will affect my ability to breastfeed my baby. I am very passionate about breastfeeding and fed my son until he was 2 and a half. I would be worried to take medication when breastfeeding In case it harms my baby. Any advice would be much appreciated. Thank you x

[Han41]

Hi abbielacey

I'm newly diagnosed too had my first Rheumatology appointment today today they want to put me on either Methotrexate or Azathioprine both are a immune system depresant and both can be passed on to baby though breast feeding I'm not sure about other drugs have a chat with your gp or rheumatologist at the next appointment if it's before your baby is due all the best

[AbbieLacey in reply to Han41]

Thankyou x

[RebekahC]

Hi Abbielacey,

I understand where you are coming from. While pregnant with both of mine I took hydroxychloroquine and prednisone, although I always felt a bit anxious about it so probably missed too many days. When my second was 19 months I was put on azathioprine. Although the rheumatologist said it was okay to continue breastfeeding, all of the older info on the medication said not to. I therefore stopped feeding him to take the medication, as would have been too anxious otherwise and probably wouldn't have taken it properly.

But, my rheumatologist is very reassuring that it would be fine to get pregnant while taking it, and indeed to breastfeed, so it seems that it isn't a complete no-no. I guess it's about weighing up your health, and how you'd feel about feeding whilst on these types of drugs?

I hope you are feeling okay. Good luck!

Rebekah x

[AbbieLacey in reply to RebekahC]

Thanks so much Rebekah. It's just such a worry. Think im just going to try and stay off all medication as long as I can. I have a good pain tolarance lol and as it's all very new so hopefully I'm just at the early stages. Thanks for your response and good luck to you too xx

[Dalilatm]

Hi Abbie! Congratulations!!!! How much I miss to be pregnant I love it. Life growing inside me. Just wonderful.

I've had lupus for almost 20 years and my baby is already 8 months old <3. Pregnancy was fantastic. I was in remission, which made a big difference. I only took Aspirin (75mg), Hydrochloroquine (400mg) and Clexane during those 9 months. These don't affect your baby. And I breastfed him for 3 months (same treatment). I had to stop (eventhough I dind't want to!) because I was absolutely shattered, I was taking care of him 24/7, having no rest at all and my lupus pain was starting to get worse. But if you have sb to help you such as your mum, partner, etc, then that you shouldn't be your case. Plus, you already have previous xp on breastfeeding

Here is the list of medication for lupus and its compatibility with pregnancy and breastfeeding (Page 3). It's a PDF, the guideline from the British Society for Rheumatology (BSR and BHPR guideline on prescribing drugs in pregnancy and breastfeeding—Part I: standard and biologic disease modifying anti-rheumatic drugs and corticosteroids)

goo.gl/k5Dgdo

Enjoy!! best wishes

[AbbieLacey in reply to Dalilatm]

Thank you so much this is really helpful to here and very kind of you. I really enjoyed my first 2 pregnancies but have found this such a worry. But starting to feel better now. I have a really supportive partner and family so I'm very lucky. Did you have to be induced with your pregnancy? And when did they recommend you stopping the asprin? Do you have to be on medication every day with lupus or could u just take something for if you flare up. Sorry for all the questions. Hope you don't mind me asking xxx

[sflynn84]

Hi, I was diagnosed when my second was9 months old. I did start weaning her because I was put on plaquenil. In hindsight I wish I continued breastfeeding as I now realize it is a very safe medication. You may find that your symptoms will increase after the baby is born because you are worn down, lack of sleep, etc. I too told my doctor I didn’t want any medication and could tolerate the pain but we have to think of what could happen internally and plaquenil has worked wonderfully for me.

[AbbieLacey in reply to sflynn84]

Thanks so much for your reply. My rheumatologist suggested me going on hydroxychloroquine after my baby is born if I can't manage but I'm very stubborn lol and can tolerate a lot but there is always the worry of what damage I could be causing. It's reassuring to no how well plaquenil is working for you. That's nice to hear xxx

[Dalilatm]

Sure! I read hundreds of research studies from everywhere such as

ncbi.nlm.nih.gov/pubmed/154...

I needed to be 100% of it. I didn’t take the risk with Azathropine.

Blessings! Xxx

[AbbieLacey in reply to Dalilatm]

Thank you so much xxx

[Wizz13]

Hi, I was diagnosed with lupus after having my first child. She was 11 months at the time and I was still exclusively bf. I was started on a lot of medication including prednisolone and hydroxycloroquine and was told that it was still ok to breastfeed. I continued til she was 13 months when I became very unwell and found out i had stage 4 nephritis. I was then forced to stop as was put on mycophenolate which is toxic.

It depends how much pain you are in. I only developed lupus symptoms once I had my baby so I think mine was triggered by this. I got to the point where the joints in my hands were so painful that I couldn’t hold her or change her nappy without being in agony. Getting out of bed and getting down the stairs was almost impossible and I was thinking about a stairlift. I was 26 at the time! I’d never been a fan of taking tablets so was really upset that I had to start taking all these different pills. But within 48hrs of taking them, i was lik a new person. Completely pain free. A lot of that was the steroids. I’m nearly a year on from diagnosis and weaning off the steroids so I don’t feel as invincible as before. I’m trying to see how my diet affects my pain. A lot of people recommend cutting out gluten in auto immune diseases to reduce joint pain.

We’re hoping to try for a second but have been told we’ll need full counselling by the consultant before hand as a lot of my Meds will have to change. I think they’re waiting for me to be stable for a while before we’re given the go ahead.

I’m hoping I’ll be able to breastfeed again but that is something we’ll need to weigh up and figure out. For you though, if it’s just the hydroxy, I continued to breastfeed on this as was advised by multiple physicians that it was safe to.

I really hope it works out for you. If you can manage the pain, great, but if you do get to the point where you can’t, don’t be afraid of taking them.

Sorry for rambling for so long. All the best x

[AbbieLacey in reply to Wizz13]

Thanks for your reply and sorry to hear you were so poorly. Thats the only part of the lupus that scares me. So pleased to hear you are feeling better. I have tested positive to Antiphospholipid syndome too while pregnant but are not showing any of the symptoms of it so hopefully I may just be a carrier of the antibody maybe. Thanks again Abbie x