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Thread: Flu vaccines

  1. #11
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    Quote Originally Posted by jmmilliorn View Post
    Since I was diagnosed with WG, my doctor told me not to take the flu vaccine any more. If you have a WG doc they will probably tell you the same. If you ask someone not familiar with WG, they may not.
    It may be that you should not take any vaccines while the disease is really active. Interestingly, my wegs doc at Cleveland Clinic gave me a flu shot last fall when I was having a minor flarre (no obvious symptoms). I got past the flare ok with two doses of rituxin and had no other issues during the succeeding months.
    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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    Unfortunately no one in the area has a lot of experience, my current financial situation does not allow me to travel very far, but I have been on the search for someone atleast with experience.

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  3. #13
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    Quote Originally Posted by jmmilliorn View Post
    That's pretty scary, Shawn. Only three WG patients? You should really consider seeking out someone who sees many WG patients as your primary quarterback for treatment ongoing. Even better is someone who sees only WG or vasculitis patients. You've got a lot at stake here. Don't take a chance on an inexperienced physician no matter how competent they are in their specialty field if they aren't very familiar with WG.
    Hi Mike,
    having 3 weggies is a lot of experience in my country. most of the docs that I had/ have never saw a weggie but me.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #14
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    Quote Originally Posted by sbeach78 View Post
    Unfortunately no one in the area has a lot of experience, my current financial situation does not allow me to travel very far, but I have been on the search for someone atleast with experience.
    this forum is the best wg-doc you can find on the globe.
    as for flu vaccines - I am afraid that they can cause flaring.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #15
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    Who do you see at the Cleveland Clinic? I see Dr. Alexandra Villa-Forte. She has/had hundreds of Wegener's patients. I've had such bad experiences with rheumatologists and other specialists that are tops in their field but don't know WG I'm extra cautious. I nearly died before I went to CC.
    J. Mike Milliorn, Santo Texas
    Diagnosed Jan. 2011
    at the Cleveland Clinic

  6. #16
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    I have never been to Ohio. The only people I have seen are in Arkansas and Oklahoma. Sparks Medical great staff, but no experience, And OU Med. Who had only a few patients and terrible staff wouldn't suggest anyone going there my room was dirty.

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  7. #17
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    A lot of specialist passing me back and forth. Only the rheumatologist has seen anyone with WG.

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  8. #18
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    Maybe your insurance would help with transportation if there is no WG qualified doctor in your area? Doesn't cost to ask I guess.
    J. Mike Milliorn, Santo Texas
    Diagnosed Jan. 2011
    at the Cleveland Clinic

  9. #19
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    True never hurts to ask I will give them a call, not like I don't have the time...thanks

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  10. #20
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    Well flying to a WG center like Cleveland Clinic is an extra cost, but so is getting sicker or losing an organ due to someone's lack of experience. Once I was diagnosed and a treatment regimen started, I only fly to the CC once or twice a year. My doc lets me communicate with her directly by email, iphone or fax. Getting started on the right medicine (without complications or reactions) is important. I doubt if I would have gotten Rituximab from the local yokels. That is the best WG medicine for my condition right now. I was allergic or had complictions from Imuran, Methotrexate and Cellcept. RTX is saving me right now. I've tapered down on steroids from 60 mg/day to only 9mg now, too.
    J. Mike Milliorn, Santo Texas
    Diagnosed Jan. 2011
    at the Cleveland Clinic

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