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Good news/Not so good news (long)

sparkle83sparkle83
in North Dakota Babies

Good news: DH and I are officially TTC (yay!).

Not so good news: Yesterday I had an appointment with my rheumatologist. I found out that the medicine I get every 4 weeks through IV infusion stays in my system for 3 months (pretty much the ENTIRE first trimester). This was news to me. I guess I figured that since I require an infusion every 4 weeks, it was mostly out of my system by then. The medication I am on is so new that there is absolutely no research about it's interaction with pregnancy (very scary.) Her exact words to us were "I just don't know what type of malformations there could be." I had a mini freak out sesh in the office at that point. She also said that I could have a perfectly healthy baby. None of the other doctors in her group have patients on my medicine so nobody can tell me if it is safe enough to be on while TTC. As soon as I find out I'm pregnant, I would stop the IV infusion.

I am beyond scared at this point. My OB wants me to take a HPT before each infusion, but she said that before I found out how long this medicine stays in my system. I am just so worried that my stupid body will hurt any future baby before they even have a fighting chance. And, I can't go off this medicine before getting pregnant. I know firsthand how crippling RA can be, and I have to be able to get out of bed each day and function. DH has been so supportive and wants to continue with TTC. I do too, more than anything. But, I am terrified at the same time.

Thanks for listening, ladies. It helps to get my feelings out. :)

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Re: Good news/Not so good news (long)

  • trevesstrevess

    First of all, CONGRATS on TTC!

    ((Hugs)) to you.  I had no idea you were dealing with this!  I'm not going to suggest this because it sounds like something is wrong at your doc's office, but merely as food for thought...have you considered a second opinion? 

    In the meantime, stay strong- it will happen and everything will fall into place for you!

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  • MrsBlayneMrsBlayne member
    I have avoid friend with RA who used an injected medication while pregnant, I think she gave herself a shot daily. Would it be possible to switch meds? I could find out what it was for you if you want.
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  • DreamsBride411DreamsBride411 member

    I had no idea you had RA either!! (((((hugs))))  you've got a lot on your plate, girl!  I hope this journey is as normal and peaceful and least crippling it could possibly be for you... TTC & being pregnant is hard without RA, I can't imagine it with... 

    We're all here for you!!! Congrats and good luck!!

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  • sparkle83sparkle83

    Carollyn-This is my 5th rheumatologist in 7 years. I've been with her the longest and she is great. She is super smart and researches everything, plus she is kind and really wants what is best for me. The problem is the medication, Orencia. It is just too new. I ws actually one of the first people in the midwest to even be on this medicine.

     Blayne: I have been on pretty much every single RA medication out there. I've done some injectibles (Enbrel, Humira) and they did not work for me. But, if you could find out which one she is on, that might give me something else to look into. I'd really appreciate it.  

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  • dani_girl08dani_girl08
    Congrats on TTC--how exciting!!!!  I'm so sorry to hear about your trouble with RA.  I hope that you can get some clear answers that will ease your mind!
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  • natalee215natalee215
    Congrats on TTC. Best of luck on getting your meds figured out.
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  • Mrs.Gale920Mrs.Gale920
    Congrats and good luck with your meds!
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  • AprilJTAprilJT
    Congratulations on TTC.  I hope that you get something figured out with your meds.  I can't imagine how stressful not knowing would be, esp when you are just trying to take care of yourself.  Good luck!
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  • jcombsjcombs
    Congrats on TTC!  I know its hard to stop the meds that help.  I had to switch to less effective fibromyalgia medication while TTC and PG.  And my magic med that worked had been around for years, but no one bothered to check on the effect on fetuses.  Its a tough situation to be in!
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  • Eleise96Eleise96
    Congrats on TTC!  And, I hope you can figure out a solution to your medication issue so both you and a baby have a happy, healthy pregnancy!
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  • Mrs.S_0909Mrs.S_0909
    Congrats on TTC! GL getting your meds figured out, hopefully you won't have a hard time with it.
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  • Lisa7Lisa7 member
    Congrats on TTC! I hope they can get everything figured out with the meds and GL!
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  • Mrs.G_09Mrs.G_09
    Congrats on TTC! I hope everything works out with your med and you can have a healthy/happy pregnancy!
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