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Thread: Hello from Rochester, NY. Just diagnosed with GPA and coming to grips

  1. #31
    Join Date
    Nov 2013
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    Beaumont, Alberta, Canada
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    Quote Originally Posted by lag713 View Post
    I agree that your doc should consult with those at the Vasculitis Foundation. It would be a mistake to wait 6 weeks to start taking medications to actually treat the disease given that many drugs take months to go into full effect. Prednisone makes you feel better by bringing down inflammation but it only treats the symptoms, not the disease. Given your symptoms, I think methotrexate would be most appropriate but that's something to discuss with your doctor. Cellcept has a higher relapse rate compared to methotrexate.

    I would recommend that you get a CT scan to see if any damage has occurred in your lungs, urinalysis and blood work to check your kidneys, a hearing test to see if your hearing is intact, as well as an endoscopy of your sinuses, trachea, and upper lungs. I was just diagnosed in January and I've had the workup. Best thing to do at this point is establish a baseline and preserve the functioning you have by getting ahead of the disease - prevention is invaluable. Don't let the information on the internet scare you. Let this be an opportunity for you to take charge of your health and well-being. You can live a long and healthy life if you are proactive about treatment, checkups, treatments, etc. It is a chronic, lifelong illness so you will need to acknowledge that the disease can become active again at any time and you will want to be on top of it.

    I know of Dr. Shapiro (rheumatologist) and Dr. Lebovics (ENT) in NYC but that would be a trek from Rochester. I make the trip from central Connecticut every 3 months to see Lebovics because of his expertise - he sees a lot of weggies every week whereas my local rheumatologist and pulmonologist have seen less than 5 each in their careers. Dr. Lebovics put me at ease because he is very knowledgable. Given your location, there may be docs in Canada that would be easier to access.

    I recommend the resources collected as "stickies" in the General WG Chat forum. I'm sorry that you received this diagnosis and are floundering through the information online. You have support here. I know you must still be in shock. It took me a few weeks to really accept it as being real. It will take longer to come to terms with what it means. I still feel like I freak out whenever something goes wrong but I am learning to roll with the punches and accept what is out of my control.
    Welcome to the forum, you will get such good support and information on this forum, this is great advice. When my husband was diagnosed we put blind faith in our doctors, with this disease that's not always the best approach. You have to be knowledgeable and advocate ( sometimes) quite fiercely for yourself! read, read, read and ask questions of your medical team. Read paragraph two above again - it's great succinct advice!
    - You can judge the character of a person by how they treat those who can do nothing for them.

  2. #32
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    Near Rochester, NY
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    If you read my post above you will see how discouraged I am with Cleveland Clinic. However, there are MANY on this forum who are very impressed with them. The Dr. I have seen most often recommended is a Dr. Ville Forte. Not entirely sure of spelling. She is a wg expert. I do not have WG. Just garden-variety asthma, albeit a life changing version. No one here seems at all interested in my case. Fortunately, I have great doctors in Rochester, NY. I just thought that because I was going to be near Cleveland this summer for the birth of our granddaughter, it would be a good idea to see if I could get a different perspective. My biggest lesson was that my home town doctors are better. But again....the WG care appears to be excellent.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  3. #33
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    Quote Originally Posted by Velma View Post
    Do you think the care is better at Cleveland? I live in WV and have exhausted all the docs here and went to Pittsburgh but they have me in a bigger mess so now looking at Cleveland. What is your opinion?
    How about Philadelphia where Merkel is located? He is considered top shelf in Wegs.
    Knowledge is power! Wisdom is using it to make good decisions!

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