30 weeks pregnant...starting Remicade next week...need positive vibes and remi stories :)

I have posted a few times...I am 30 weeks pregnant with a flare that we can't get under control. After a hospital stay and high doses of steroids all of my doctors are suggesting Remicade to get things back on track and avoid preterm labor.

I would love to hear POSITIVE Remicade stories, advice, hugs, love and the like. Need some positive reinforcement to keep me going. I am fully aware that we are all different and we all respond differently but under my circumstances I am holding on to optimism with everything I've got.

Thanks in advance for the love!

Thanks for the encouragement pixie! I hope to hear more stories like this where Remi has helped. I'm so tired of wishing and hoping.

iPoop what were your symptoms like before you started Remicade? And what mg of prednisone were you on...were you able to taper fairly quickly after you started the infusions?

Post Edited (TotesMagotes) : 1/31/2015 7:11:44 PM (GMT-7)

remicade was a pretty easy drug to be on for me. my only side effects were intense migraines for about 3 days after infusions, constipation, and frozen joints. honestly, these side effects weren't that bad compared to my HORRENDOUS flare.

i started it with 6mp and when i was on 40 mg pred. i tapered off pred no problem.

Remicade is my miracle drug! I love it! I cried tears of happiness when I was scheduled for my first infusion October 2013. I was in so much pain before and Remicade gave me my life back.

I'm so glad you posted this because I had been wondering what I would do when I have kids someday. I'm not even in a relationship right now, but I know I want kids somewhere down the road. Hearing that you're being put on remicade while pregnant gives me hope that I could stay on remicade if I ever became pregnant. I feared I would have to stop it and endure an awful flare.

before getting preggers i was only on melsalamine and my symptoms were not so bad and my flares where not so bad. it was awsome during pregnancy i had no symptoms and could eat what i want. then i had my daughter and i had the worst flare of my life. they put me on steroids and imuran. my flare went away for a while but came back with a vengance about 5 months later. got into another really big flare and this time time i got steroid dependant and everytime i would go down to 15mg of pred it would start flaring again. remicade saved my life. they put me on it and i was back in remission after the loading doses. ive been symptom free for a year now. im even introducing foods i havent eaten in a while and things are going great. i dont really get any side effects from the meds other than catching more colds. good luck!! hopefully remi will work well for you so you can enjoy your little baby :)

Hate to burst your bubble but according to embryotox.de it is not recommended to continue Infliximab when you're 30 weeks pregnant. Up until then it shouldn't be a problem but Remicade will reach the placenta. There is a 3 times higher chance that there will be malignant lymphomas because it has a huge impact on the baby's immune system. One mom was treated with Remicade and the boy died after he was vaccinated when he was 3 months old. It's recommended to wait with vaccinations after the baby is 6 months old. It's ok to continue with Remicade after giving birth and even breast feedings seems to be OK.

I know you probably don't know German but there is always Google translate for the details: embryotox.de/remicade.html

@Andrina I find your post insensitive and unnecessary. Bursting my bubble?? I can't read German and there are plenty of women who HAVE to continue remicade into their third trimester to combat a flare IN THE US.

I've done my research and spoken with too many doctors to count. My goal of this post was for positivity. I'm not going into this blind. I don't need to be anymore scared than I am. I'm between a rock and a hard place on making sure I don't trigger preterm labor. And taking high doses of steroids (that are only keeping things at a bearable threshold) for the next 10 weeks isn't a viable option.

@byebyeuc yes under normal circumstances when the option is there they do suggest stopping infusions between 30 and 32 weeks. Fortunately my loading doses will be at 30 and 32 and my last at 36. The main concern for the baby will be no live vaccinations for the first 6 months. I will be monitored by my ob, high risk ob and GI. All of which are on board and have suggested the same treatment regimen.

Post Edited (TotesMagotes) : 2/3/2015 5:39:09 AM (GMT-7)

@andrina please also note that the woman who vaccinated her child at 3 months old had given a live vaccine we do not in the US. http://www.pregnancystudies.org/ongoing-pregnancy-studies/autoimmune-studies/specific-treatments-autoimmune/infliximab-remicade-fact-sheet/#birth-defect

@ipoop yes I understand. Wording via website can always come off not as planned.

When are you starting? I had pretty good experience with remicade, aside from the fact that i was a non-responder to antiTNF meds & I got a life threatening infection (probably not from the remi but from the combo of stuff i was taking). The infusion is a bit time consuming but they make you comfortable with warm blankets, drinks, snacks, magazines... I bring a computer and get some work done. I was so nervous because it takes hours and I knew I would have to use the toilet, but luckily, you can get the the toilet with the IV. it's a little cumbersome but not difficult once you do it once. I hope you have overnight success :)

Regarding the toilet, my advice is to pick one of the chairs close to the bathroom. I scoped it all out on day 1 and now when they ask where i want to sit, i beeline for the seats toward the bathroom. I am actually feeling well now but I am still a worrier, better to be closer.

Good luck, Totes. I'm sure this wasn't an easy decision and I hope that things ease up!

TotesMagotes said...
Caitie it makes me so happy that Remicade helped you so much. I've been struggling with what to do. I just want to be healthy for my kids. How many infusions did you have before you noticed it working? We're you on a prednisone taper?

I've spoken to 5 doctors so far and all say Remicade is safe while pregnant. The risks of a uc flare far out weigh anything else.

I just hope I respond. I'm so tired of the pain.

It was about 4 infusions before I felt back to normal. After the 3rd one the pain started to go away, but it was still there. And yes I was on a prednisone taper. Not even sure if I was tapering yet when I started remicade lol.

I've read that remicade is safe while pregnant too, but I know I'll have to talk to all my doctors if I ever become pregnant. Imuran on the other hand... everything says no and no breast feeding either so I guess I'll have to stop that one day lol. Hopefully when that time comes, remicade will be able to hold off a flare for 9 months on its own. :)

Good luck on your infusion. Sounds like remicade/infliximab is a pregnancy category B drug, fairly safe, but some unknowns.

• Category A: Controlled studies show no risk or find no evidence of harm.
  
• Category B: Animal studies show no risks, but there are no controlled studies on pregnant women.
  
• Category C: Animal studies have shown risk to the fetus, there are no controlled studies in women, or studies in women and animals are not available.
  
• Category D: There is positive evidence of potential fetal risk, but the benefits from use in pregnant women may be acceptable despite the risk (i.e. life threatening condition to mother)

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Pregnancy and ibd (from the resources thread)
onlinelibrary.wiley.com/doi/10.1002/ibd.20532/pdf

Biologic Therapy
Infliximab, a pregnancy category B drug, is approved for the management of CD and UC. Infliximab is an IgG1 antibody, which does not cross the placenta in the first trimester, but very efficiently crosses the placenta in the third trimester. While this protects the infant from exposure during the crucial period of. organogenesis, infliximab levels can cross easily in the third trimester and therefore be present in the infant for several months from birth. There is a growing body of evidence that suggests infliximab is low risk in pregnancy.
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For Caitie
Immunomodulators
Azathioprine/6-Mercaptopurine/Imuran
6-Mercaptopurine (6MP) and its prodrug azathioprine (AZA/Imuran) are pregnancy category D drugs.