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

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

    Hello everyone, I was just diagnosed with GPA 2 days ago, so I'm still in a state of shock. I had been ill for several months with bizarre symptoms (eardrum ruptures that didn't heal, flu-like aches, and eventually migrating joint pain) and I finally went to see my GPwho ran some tests that all came back negative, but got me on Prednisone. I immediately felt better, but was uncertain what lay ahead. It took awhile to get an appointment with a Rheumatologist who took little time in diagnosing me with Weggener's.
    Needless to say, I was stunned. I didn't see it coming. We suspected an AI, but this was a pretty devastating diagnosis. He didn't really give me a lot of information during our session, so what I've learned from Google has been on my own. I'll tell ya, it's scary. (Obviously, I don't have to tell ya. You can all relate.)
    So, I'm here to learn, hopefully laugh some, and to be part of a community that supports each other.
    I have a wife and a young daughter and I'm not sure what the future will hold, and that is scary.
    Right now, the Prednisone is doing it's thing, but I don't see my doc again for 6 weeks. As soon as I found out about the disease, I wondered if I should be waiting that long to get on the maintenance meds. He is leaning towards Cellcept, or as a second choice Methotrexate.
    There is not a lot of "positive press" about GPA on Google, so it's been a pretty rough couple of days gathering information.
    So, hello to all. Glad I found you.

    Brian

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    When my daughter was first diagnosed, I immediately checked the Mayo Clinic website which helped me to understand the basics. There is also much information available through the Vasculitis Foundation. We actually lived in Rochester for many years and suspect my daughter's ENT there wasn't well versed about WG because had he performed a biopsy after her initially surgery when she was 19, I believe it would have been positive. Her current ENT in Manhattan performed surgery at age 24 after symptoms for all those years were written off as allergies with sinus infections. Bottom line, make sure your doctors are highly knowledgeable about WG. The University of Rochester Medical Center should have excellent doctors so check their backgrounds.
    With regard to medication, after her initial diagnosis just seven months ago, she was given a high dose of prednisone, as well as methotrexate and bactrim. Just recently started on rituxan, so its effectiveness will take some time to determine. She was never prescribed Cellcept.
    Under the meds thread on this forum is a link to a webinar about meds. I watched that yesterday and it was very informative.
    The more you know, the better you can advocate for yourself.
    Best to you, Brian. Keep reading the posts from those who have first hand experience; they are a great resource.

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    Thanks WG mom, I appreciate it.
    I'm working with Rochester General Hospital doctors, but I have been thinking about getting a second opinion, just for the heck of it. This rheumatologist came highly recommended by my GP, but with something this serious it might not be a bad idea to find doctor that you click with.
    I agree with your advice about educating myself and being able to advocate for myself. I'll check out the meds thread, thanks.
    I'm sorry to hear that it took so long for your daughter to get diagnosed! This seems to be a tough illness to figure out depending on what symptoms you experience and who you see. My ENT had no idea what was going on with me and said the last thing you want to hear from your doctor is that you are an "interesting case." He was right.
    I'm fortunate right now to be responding so well to the Prednisone, but nervous about what the future holds.
    Take care.

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    I am also from the Rochester Ny area. I was briefly diagnosed with Wegeners...but got a second opinion and it was ruled out. I go to a group that is associated with Rochester General. The doctor who evidently misdiagnosed me was Dr. Arango. I also go to an asthma/allergy specialist in the same group....Dr. Bingemann. when I decided I wanted a second opinion before I started on Imuran, Dr. Bingemann referred me to Dr. Michael Nead, a pulmonologist who is in the URMC system. He ruled it out based on symptoms, lab tests and a bronchoscopy. I have continued to get worse as the months have progressed, so decided to make an appt at the Cleveland Clinic, which is near where my daughter lives. I have not been there yet. When I do get there, they will probably think I am a hypochondriac. My symptoms have greatly improved in the past three weeks. I feel almost normal again, after three years of getting progressively more short of breath. It might be because my GP prescribed a long term antibiotic. Or perhaps my last round of prednisone was particularly effective. At any rate, I think it is always best to get a second opinion, so you are certain before starting some serious drugs.

    At any rate, you have found an amazing group of people who will be a tremendous help to you. Good luck!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Default Off label drugs

    The next time your doctor writes you a prescription, consider this: The medication may not be approved for your specific condition or age group. Rituxan was widely used for treating GPA long before it became approved for this use.

    But you probably shouldn't call the medical board. The practice, called"off-label" prescribing, is entirely legal and very common. More than one in five outpatient prescriptions written in the U.S. are for off-label therapies.

    "Off-label" means the medication is being used in a manner not specified in the FDA's approved packaging label, or insert. Every prescription drug marketed in the U.S. carries an individual, FDA-approved label. This label is a written report that provides detailed instructions regarding the approved uses and doses, which are based on the results of clinical studies that the drug maker submitted to the FDA.

    “Many people may be surprised to know that the FDA regulates drug approval, not drug prescribing, and ... doctors are free to prescribe a drug for any[reason they think is medically appropriate],” says G. Caleb Alexander, MD, MS,a medical ethics advocate and assistant professor of medicine at the University of Chicago Medical Center. "Off-label use is so common, that virtually every drug is used off-label in some circumstances."
    Last edited by drz; 08-02-2014 at 08:24 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Hi Brian and welcome

    You are getting and will continue to receive excellent advice from everyone here.

    Best of wishes to you for a journey that is not too long and becomes 'pain free'
    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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    Booknut, do you have a new diagnosis? I'm also seeing a doctor at RGH, in the same group as your docs. I'm anxious to see my GP tomorrow to hear his thoughts, and to see if he also recommends a second opinion. At the same time, I don't want to delay treatment for something that can progress quickly and be permanently damaging. But I don't know how long it will take to get to see a second doctor either. I was lucky to get in to see this doctor in 5 weeks instead of 3 months. It's all very scary and confusing. At the very least, I can ask for more testing as others have recommended here (chest CT), just to know what exactly I'm dealing with. I hope to get more answers and more clarity this week.

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    Brian I sent you a PM, but don't think I sent it correctly. I am in Rochester this weekend for a wedding. My daughter's friend with whom I spoke last night has Lupus and sees a rhuematologist through U of Rochester Med Center ( who she says is fabulous). He does treat Wegeners as well as other AI diseases. His name is Dr.Richard Looney. I believe he is accepting new patients. I would seriously consider contacting him for a second opinion.

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    Quote Originally Posted by bgifmo View Post
    Booknut, do you have a new diagnosis? I'm also seeing a doctor at RGH, in the same group as your docs. I'm anxious to see my GP tomorrow to hear his thoughts, and to see if he also recommends a second opinion. At the same time, I don't want to delay treatment for something that can progress quickly and be permanently damaging. But I don't know how long it will take to get to see a second doctor either. I was lucky to get in to see this doctor in 5 weeks instead of 3 months. It's all very scary and confusing. At the very least, I can ask for more testing as others have recommended here (chest CT), just to know what exactly I'm dealing with. I hope to get more answers and more clarity this week.
    I am sorry it has taken so long to get back to you. I have been away....trying to find answers at the Cleveland clinic. Still do not have a firm diagnosis. I am not impressed with my treatment here. Too long a story to,get into. Dr. Bingemann keeps referring to my condition as my "asthma-like" illness. The doctor I am going to here does not really seem to care what happens to me. The test he lined up for me required me to go off my meds. I ended ip with an epic asthma attack that landed me in the hospital before I could even take the test. You would have thought this would have motovated him to see that I got prompt treatment. Not so. -10 days later I am still having to call every day to get him to call me back. Supposedly the new test....a methacholine challenge test....will be rescheduled very soon. I am feeling much better because of large doses of prednisone, so I should be able to tolerate the test this time. He also told me today that he thinks Ishould go to the Asthma Center. Passing me off I guess...bit It actually looks good. If only he had suggested it at the beginning I might have avoided a lot of grief. Anyway, I plan to see what results from the test, and then I am going to give it all up and go back to my other doctors. Maybe go to the Asthma Center in the future. I. am just really tired of being short of breath almost all the time. It has certainly messed with my quality of life. Up till three hears ago, I had no breathing problems at all. Frustrating.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Hi Brian, I am a new member here, too. I was diagnosed about six months ago, after months of mysterious ear and nasal issues. I think initially one is relieved to have a diagnosis, so effective treatment can begin. But then, the implications of having a rare chronic disease start to overtake that feeling of relief pretty quickly. It is definitely scary. As you learn more about the disease and your particular case you will start to put it in perspective. Meanwhile, I hope you get a good treatment regimen established and just start to feel better. I agree with WG mom, there is great info available on the Vasculitis Foundation site, including a video series of lectures.

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