Doctors puzzles

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Greetings from the US. My daughter was diagnosed with Wegener's 18 months ago. Her affected area is her kidneys. She completed cytoxan and steroids and was deemed in Remission last November of 2015. Over the course of the last 6 weeks she has been hospitalized with pneumonia. Since the pneumonia her Lung capacity has dropped to 51%. She has had a brochoscopy, CT scan, and labs to confirm that she is still in remission. She has pain in her chest and back that the doctors cannot explain, nor the decreased lung capacity. Has anyone seen or have experience with this?


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  • Posted

    Wow what a coincidence.  I have just left my son in the emergency dept. for the exact same symptoms.  We are in New Brunswick Canada.  Hopefully he can get some help there.  He's been fighting the flu.  He says its not the Wegeners.  Then today he said his chest was tight and painful if breathed too deep.  His GP told him to go to emergency to get an x-ray.

    As for your daughter, maybe it just will take her a bit longer to get over the pneumonia.  Wegeners people seems to get things harder and last longer than people who do not have it.

    Is she on any maintenance drugs?  

    I hope she will feel better soon.

    Good Luck

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    • Posted

      Thanks for the response. She has been on celcept as her maintenance drug. She hurts all over her body. We are going to Childrens Hospital inn Virginia next Tuesday to meet with her team. Is your son doing better?
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    • Posted

      Not really. He had chest xray and blood work done. No pneumonia. The emergency Dr said he has a throat infection and gave him strong antibiotics. His RH doctor is away until the end of March. His whole body hurts and he's so weak. Hopefully with the antibiotics he will feel better soon. But this has been a week now with no improvement. How old is your daughter. My son is 32. He had to move back home when he was diagnosed. Although he actually was staying here before diagnosis because he was so sick. I hope you find some answers at children's hospital but mostly that your daughter feels better. Please post how she is doing and any news or diagnosis. Wegeners usually doesn't happen to youngsters. Although it has been happening more frequently. Good Luck

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    • Posted

      It is so awful how this disease can change your life overnight. I went from a front-end manager with a major grocery chain to a complete invalid. It's seems to strike every body differently. I do hope you all get better and have faith.

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