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Thread: Diagnosed while pregnant

  1. #1
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    Default Diagnosed while pregnant

    Hello all. I'm new to this, so please forgive me. Within a few weeks of finding out we were pregnant, I started having nose bleeds and coughing up blood. It was very little at first, but I still contacted my ENT (I have a history of sinus issues) and we figured it was just a nose bleed. After a month or so, I would cough up large amounts of blood in the morning. By my second trimester, swollen and painful joints, mainly my knees and feet, joined the blood. My OB sent me to a rheumatologist who put me on 10 mg of prednisone, after he insisted I check with my OB, which I did, and ordered a bunch of blood work. The pred helped. When I went back to him he diagnosed me with seronegative rheumatoid arthritis. He then started to prescribe a medication and when I mentioned to my mother about the pregnancy, his response was, "Oh, you're pregnant? I can't put you on that." And then he cut back the pred to 7.5 mg. Needless to say, I now drive 40+ minutes to another doctor.
    One of the first questions the new doc asked was if I had been coughing up blood. I then moved to 20 mg of pred and had more blood work done and the original work sent to the new doc. He diagnosed me with Wegener's and I was bumped up to 60 mg of pred (break-though pain and blood again) and now imuran. Chest x-ray and chest ct were both fine. I now see my OB, a high-risk doctor, my ENT, my rheumatologist, and I will be seeing a pulmonary specialist in January. My labs apparently came back some better because the pred is being bumped down week by week and the imuran was bumped up.
    I really want to be off of prednisone. I have been on it for almost 3.5 months. However, the baby is doing well!!
    Thank you for listening! This has all been very overwhelming and stressful.

  2. #2
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    First of all, Welcome to the forum. I'm glad you found it.
    Congratulations on the pregnancy, that is wonderful news.

    Our immune system is already very low when we are pregnant and that's why we get colds etc during the pregnancy.
    I'm sorry that you got hit with WG, however I'm glad that you changed doctors and it sounds like you are now getting great care.

    Don't stress about the pred at this stage, it is helping to keep the inflammation and therefore the pain, away.

    Don't be a stranger - and keep us posted on your progress.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    You dear dear soul!!! My heart cries for you and yet im here to tell you you are gonna make it!!! Just hang on to the strength you are given to get out of bed each day and greet your new self. I cant imagine the emotion behind pregnancy and a new WG DX. My story is a little different in that i was dxed 6 years before my first pregnancy. I was on imuran the whole way thru. It is very safe with pg. My boys have no health issues at all. Actually my pregnancies put me into remission. Im curious how far along you were as i wonder if your WG was there already. It sounds as if you are very blessed with good dr. That can literally be a alife saver! Trust them and yet ask lots and lots of questions and if you dont feel good about an answer keep pushing until you do. There are NO stupid questions when it comes to this stupid disease! And bless ur soul you found this site now. You will find lots of experience and empathy...thats one the docs cannot give. Bounce ur questions here...it will give u peace of mind and education as well. I hope to see much more from you!!! Amanda

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    Welcome Wiegson, what an intro to WG...I'd heard, simply rumor from discussion on here, that pregnancy actually helps fight WG symptoms? Your baby is going to be a super baby with all that pred in you! Sheesh. Sounds like you are on track now with good docs; most docs hardly know what WG is let alone treat it. My current GP had only seen one WG patient in 20 years...moi! Try to keep the stress down as that exacerbates WG oftentimes. Keep at it, you & the baby will be fine with fortitude, patience, and understanding. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Congrats on the baby !!! Don't let WG ruin this beautiful time in your life!!! I completely understand you not wanting to take the prednisone it is a horrible drug and I refuse to take it but I'm on chemotherapy treatment! so I guess just keep asking if you can wean off it. The side effects were too bad on me. I also wonder will you get your baby tested for autoimmune diseases after its born? They don't believe as far as I learned that WG is genetic but I just wonder if it's something you plan on doing? Thanks
    Amy


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    Welcome to the forum. I am sorry for the diagnosis of WG but you have found a great place here for support and information. Congratulations on your pregnancy. With proper medical care and the right doctors I'm sure everything will go fine. Let us know how you are doing in the future.

    Karen
    Karen; dx'ed April 2014

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    Thank you all for your support!! I am still doing well, as is baby!!


    Sent from my iPhone using Tapatalk

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    I'm glad that you joined us. Congrats on the having a baby. You will find that you can ask any questions and get an answer back 24/7. Best wishes to you on your treatments.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Hi Wiegson...you sent me a private message and i tried to respond but im not sure you got it. Did you ? -Im so blessed

  10. #10
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    Welcome, Wiegson! I'm sorry I missed welcoming you earlier in the month. Everyone has pretty much said it all. I'm just glad that you have found us, and glad to hear the latest that you and the baby are doing well! We will be looking forward to hearing more from you.
    Anne, dx'ed April 2011

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