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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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    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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    Hi Brian,

    Welcome to the forum. Lots of good folks here.

    You may want to either have your doc consult with a Vasculitis Foundation medical consultant/expert or take a trip to Cleveland Clinic for evaluation and establishment of a treatment plan. Drs Gary Hoffman, Carol Langford, and Alexandra Villa Forte are all excellent. I see Dr Villa Forte and am most pleased with her care.

    Good luck!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    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.
    Last edited by lag713; 08-01-2014 at 09:07 PM.

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    Sorry to see you join our little elite club, Brian. I think it was Will Rogers who said "I wouldn't want to belong to a club that would have me". And, that holds true here. But, here we are. You'll go through ups and downs. Some people have some rather mild cases and continue on with life in a rather normal manner. While others, really have a bad go of it. I have been in the "bad go of it" area for the past 5 years. It was very depressing at times, but we kept plugging away and finally got the right mixture of drugs. For the past 5 months, life has been good. Lets hope you can reach karma real soon. Welcome to the forum..... vdub
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    A good doctor is definitely important, like everyone said. It does take some stress off, knowing you have a doctor you can really communicate with and one who knows what they're doing. It took me awhile (6 years) to finally be diagnosed so I was almost relieved when it finally came. Now, at least, you know what you have and you know what your options are. Like lag said above, the best thing you can do is be on top of your health and treatment and hope for the best. "Cautiously optimistic" is what I aim for and so far I've been pretty good with that. I try to minimize stress and take care of myself as best as I can so I don't put my body through more than it already has to. My diagnosis was a big change in my life but I have had a few positive things come from it so I try to focus on those things as much as I can. There's a lot of support and information on this forum so you're off to a good start!
    Diagnosed October 2012

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    Welcome, Brian. No, please don't get too caught up in what you read on the internet. Right here is pretty much the best source of info. There are some good sites such as Mayo and John's Hopkins, and the VF site, but even some of them are a bit out of date in places, regarding treatment meds and such. Here, many of us know a lot by virtue of reading about the many experiences and knowledge of other members, and get a feel for things over time. I have learned a lot more here than from any doctor or any other site on the web.

    I agree with lag713 that once one is diagnosed, it is not standard procedure to wait to prescribe the immunosuppressant drug. Prednisone alone is not enough. And given the type of involvement you have, methotrexate seems to me to be the most usual choice, given what I've read here. There are stronger drugs, but they can be saved in case of more severe involvement, such as lung or kidney. A lot of people have done well on MTX. I don't know much about Cellcept, except that it doesn't seem to be commonly prescribed, especially as the initial drug, but even as a maintenance drug, that is, for when the disease has been brought pretty well under control by the initial treatment but needs continuing medication to stay that way. If someone can't tolerate MTX, or one of the others, they may be given an alternative.

    Anyway, my intuition is also that a second opinion would be warranted, and perhaps you could get started sooner on your full treatment and minimize possible damage from stretching things out too long. Perhaps you could see one of the well known docs listed above, or others listed here: VF Medical Consultants Then if they are too far for frequent trips, maybe one of them could recommend a doc in your area, or your doc could consult with them, as they have made themselves available for that. Good luck! And don't get too scared, most of us do quite well for a long time with proper treatment. This may never have to affect your bringing up a family, having a career, and the other things we do in life.
    Anne, dx'ed April 2011

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    I was put on prednisone as soon as the provisional diagnosis was made locally, based on the positive ANCA result, etc. After consulting with the rheumatologist I would be seeing in Seattle, my internist immediately ordered the chest CT and blood work to rule out lung and kidney involvement. If that has not been done in your case, I would be concerned and looking for explanation from your doc and/or another opinion. I ended up waiting two weeks to start immunosuppressant treatment, but the very day I saw the rheumatologist I was started on self administered injections of methotrexate and other meds. Six weeks does seem like a long wait, especially if the extent of disease in your case is still unknown.

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