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Thread: This is my life changing story

  1. #11
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    Quote Originally Posted by annekat View Post
    I agree. My ENT has to be prodded to send reports to my WG doc and my primary care provider. Then I end up having to tell the WG doc what the ENT said. This annoys me, as I don't think it is my job. Finding a team that works together is more likely at a well-known facility that has a competent rheumatology and vasculitis clinic along with the related specialties for the areas that affect us. I feel the need myself to find something like this.
    While having all our docs in the same place and on the same page is ideal, it's not reality - yet. My PCP in Columbus orders and reports my monthly labs. My rheumy at Cleveland Clinic needs to see them too. To make sure she does, I update a MS Excel spreadsheet and send a copy to her (by snail mail now - until Cleveland Clinic's MyChart system will allow me to include them in an e-mail).
    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

  2. #12
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    Well, as long as it works for you, Pete, it seems OK to me!
    Anne, dx'ed April 2011

  3. #13
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    I haven't had a problem with my docs providing the info to each other, guess I am lucky. My ENT in Naples dictates a letter to CC while I sit there, provides me with a copy before I leave works well.

  4. #14
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    Quote Originally Posted by jakekell View Post
    I haven't had a problem with my docs providing the info to each other, guess I am lucky. My ENT in Naples dictates a letter to CC while I sit there, provides me with a copy before I leave works well.
    Maybe it's just my deadbeat ENT. I actually like him, for the most part, just think he's too casual about things, or maybe it's his office staff's fault.... who knows...
    Anne, dx'ed April 2011

  5. #15
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    I maybe just got lucky with my ENT, happens sometimes.

  6. #16
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    Quote Originally Posted by annekat View Post
    Thanks for sharing your story. I don't know what all meds you were given in the hospital but WG patients with both lung and sinus involvement are usually started off on a heavy hitting immunosuppressant like cyclophosphamide (Cytoxan, CTX), which can be given by infusion or orally in pills, or rituximab (Rituxan, RTX), given by infusion, in addition to prednisone and Bactrim. Methotrexate might not have been a strong enough med for your situation initially, though it might be fine for a later stage. But it sounds like it was problematic for you, and there are alternatives which your rheumatologist should know about. It also seems like there should have been a CT scan of your lungs in the hospital, if there wasn't. Your doctors may be inexperienced, and Pete's recommendation to try Cleveland Clinic in FL is a good one, I'm sure. Luckily, it sounds like your dx came relatively soon after unusual symptoms began, unlike some of us who have gone a couple years or more before dx, since WG tends to mimic things like allergies and sinus infections. This earlier detection will minimize permanent damage that can be done by the disease, although not getting proper treatment will counteract that benefit. Yours is another example of how every case is a little different. Keep us posted on how things go.
    Now more than ever, we are feeling the need to find new doctors that are experienced with WG. We were on the phone today calling different rheumatologists and our first question to them was, "Will you please ask the doctor if he/she knows how to treat WG?" They told us they would and get back to us. We thank you all for your responses. It has helped us a lot.

  7. #17
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    Quote Originally Posted by mishb View Post
    Hi Power couple and welcome to the forum.

    I'm so glad you found us and it really sucks, that you needed too

    I hope that you get to catch up with members in your area, it really helps knowing that you are not alone in this.

    Your story is so familiar and also different, to many of us. I also would recommend checking out the Cleveland Clinic (from what I have heard), to get the correct treatment plan.
    We thank you. We hope to be under the correct treatment plan soon. We feel as though something is missing. Hopefully we will find a Vasculitis Specialist soon. We will keep searching until we find one.

  8. #18
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    Quote Originally Posted by gilders View Post
    As Anne mentioned, most people diagnosed with Wegener's need some of the stronger drugs to get in to remission.
    It seems like the prednisolone is keeping Wegener's from becoming even worse than it is at the moment and your 4 shots of MTX "may" (I say "may as it's quite hard to definitely say if you're in remission or not) have briefly knocked you in to remission. But I really think you need to see a vasculitus specialists and get Wegener's butt kicked in to remission with the big guns (cyclophosphamide or Rituximab).

    By the way, your story was well written. Well done with remembering all the dates, it helps to follow your "journey" when it's written chronologically accurate.

    I'm not sure if it's the prednisone that is making you feel so tired. I'd guess it's Wegener's, itself, that is giving you fatigue.
    Are you raising your feet just to relieve pain or are they swelling as well? If they're swelling it could indicate Wegener's activity in your kidneys. Without wanting to worry you, kidney damage can quickly progress and is often not reversible, so keep an eye on that.
    I'm raising my feet to relieve pressure, discomfort and fatigue. I don't feel pain and they aren't swollen. Sometimes the bottom of my feet get very hot. All of these symptoms come and go. Some days I feel almost normal for about an hour or two. Thanks for the heads up regarding the kidneys.

  9. #19
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    Quote Originally Posted by MikeG-2012 View Post
    I agree with everyone else. Find a good wegs specialist and a clinic where all the docs are at the same place. With doctors at the same clinic, all your records are there too, so the ENT can see what the pulminologist is doing, the rheumy, etc, etc.
    We thank you. We will try our best to get all the doctors at the same clinic as soon as we find a new rheumatologist.

  10. #20
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    Quote Originally Posted by ThePowerCouple View Post
    We thank you. We will try our best to get all the doctors at the same clinic as soon as we find a new rheumatologist.
    Either that, or find a rheumy who treats enough WG and other vasculitis patients that he will be very familiar with other docs that he works with regularly as a team, and can refer you to them, even if not at the same clinic! That seems like one option, anyway, if the perfect doc that you find doesn't happen to be with a big clinic. Just speculation on my part, though.....
    Anne, dx'ed April 2011

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