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Thread: Granulomatosis with polyangiitis

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    Default Granulomatosis with polyangiitis

    I have just been dionose with this autoimmune disorder a couple of days ago. It's all very new to me. I'm a little scared. I was wondering if and when others did there treatment did you feel better?

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    Quote Originally Posted by acgsweetie View Post
    I have just been dionose with this autoimmune disorder a couple of days ago. It's all very new to me. I'm a little scared. I was wondering if and when others did there treatment did you feel better?
    Yes, treatment helps. It can take awhile though.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I'm just really scared. My Dr said it would take a while. Did the treatment make you sick or anything?

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    Hi Sweetie (my wife may frown upon this salutation),

    Welcome to the forum. We'll try to calm your fears.

    The good news is that with proper treatment, you may achieve a lifestyle that is normal. It would be best if you get treatment from a doc who specializes in Vasculitis. There is a list of specialists on the Vasculitis Foundation's website. The next best thing would be for your local doc (assuming your doc is not a Vasculitis expert) to consult with an expert. They can generally consult at no cost to you.

    I visit a Vasculitis expert at Cleveland Clinic. It's worth the 4+ hour round trip to see her every six months. She got me into remission and has helped me maintain it.

    Some of what you learn about this disease will be scary. Some of the side effects from the meds may be unpleasant. But, the disease can be well-managed, and you can lead a high quality life. The best advice I can give you is to communicate fully and accurately with your docs, take your meds as directed, and live your life as fully as you can.
    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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    Welcome to the forum, Sweetie. We all remember the anxiety of first being diagnosed. Take it one day at a time and follow Pete's advice above, if possible. GPA (what is also or was formerly called Wegener's Granulomatosis) can commonly affect several parts of the body and is not exactly the same for everyone. So it would help if you'd go into more detail about your symptoms and how long you've had them, how you feel, what treatments you think you'll be getting, etc., so we can compare notes with what we as individuals have been through and you can see some common threads. In the meantime, don't worry about the meds and their side effects too much; you will probably get used to them and they are better than the alternative of not being treated and things getting much worse. If any meds are a real problem for you, the docs will figure that out, and there are alternatives. Almost everyone takes high doses of prednisone to start with, along with an immunosuppressant which may be a form of low dose chemo. This will put a damper on your immune system's improper activity and slow down or stop the progress of any damage that may be occurring due to inflammation of the blood vessels which are supposed to be carrying oxygen to your various tissues and organs. Most of us feel a great deal of fatigue when first diagnosed and treated, and you must give yourself the rest you need. It will get better. Yes, it will take some time, but you should feel improvement within a couple of months. We will always have GPA hovering in our backgrounds, but it can be controlled and we can go on to lead fairly normal lives. Stress is one of the biggest things to avoid in order to stay on the healthier side, so try to simplify your life to minimize that and don't make too many commitments until you are on more of an even keel. Keep reading the forum to learn more, keep asking questions, and make use of the forum's search button to read past discussions. Good luck, best wishes, and keep us posted! We are a very caring and helpful group of people.
    Anne, dx'ed April 2011

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    My symptoms started about a couple of months ago. It started with my feet hurting so bad I could barely walk. My feet would swell up as well. Then I started to develop a rash only around my ankles. Went to my dr and they started doing blood test on me. I had an appointment to see a specialist but I would have to wait a month and a half. I got really sick and had to go to the er. I had to stay about a week they said it was effecting my kidneys. That's about how I found out what was going on. I start my treatments soon.

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    Hi Sweetie,

    Has your doc given you any info about your treatments? You will probably get an immunosuppressant (likely cyclophosphamide or rituximab), an anti-inflammatory (corticosteroids - prednisone), and maybe an antibiotic such as bactrim. Once treatment begins, you should expect a slow, gradual improvement.

    I had minimal side effects from medications. The prednisone amped my appetite, and I quickly regained the 25 lbs I lost at disease onset, and then I packed on an additional 25 lbs. It took me almost three years to get my weight back to normal.

    I could handle cyclophosphamide, but after being on it for 16 months, I had some urinary issues. I went on methotrexate and have had only minimal side effects (mild fatigue) with it.

    Rituximab was a non-event for me. I had two infusions when I showed signs of kidney involvement, and the issue cleared up within a couple of months.

    Don't get too worried about the side effects disclaimers you read regarding your meds. They're written by lawyers to cover their clients' (drug makers) backsides. You could experience side effects, but you may not. As Anne said, if one drug gives you problems, tell your doc about your symptoms and be prepared to try something else.

    If you want to let us know where you live, you can expect some recommendations about specialists.
    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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    Yes. He gave me info of the side effects and everything. Right now he has me on a high dose of pridisone. I will be starting my treatments with rituximab. He also gave me an antibiotic.
    I live in Colorado Springs, Colorado.

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