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Type: Posts; User: gunnyl

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    Re: Covid vaccins and WG

    Great articles Alysia, thank you for sharing!

    Sent from my HD1907 using Tapatalk
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    Re: Covid vaccins and WG

    Natty,

    Wishing you a complete and speedy recovery.

    Ted

    Sent from my HD1907 using Tapatalk
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    Re: Covid vaccins and WG

    Any vaccine that utilizes T Cells to manufacture antibodies is not going to be good for anyone taking RTX as it depletes our T and B cells.
    The Moderna and Phizer Vaccines are utilizing mRNA to...
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    Re: Ear, Nose and Eye involvement.

    Prednisone can cause pressure issues in the eyes, WG can also cause pressure issues with the eyes.
    When you are on Prednisone you need to have regular visits with Ophthalmology to check the...
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    Re: Ear, Nose and Eye involvement.

    Are they just treating you with Prednisone?

    My issues started in my ears, destroyed the eustachian tubes. I eventually needed tubes in my ears although I am down to one tube now.

    You need to...
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    Re: Lowest dose of Rituxan for Wegener's ?

    I'm at zero pred between infusions until I get close then I use it as a bridge.

    Sent from my HD1907 using Tapatalk
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    Re: Lowest dose of Rituxan for Wegener's ?

    I'm at 500 every six months. I don't know that lower with more frequency would be optimal for GPA. Are there any GPA studies ongoing that you are aware of?

    Sent from my HD1907 using Tapatalk
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    Re: Accutane and Rituxan

    Personally I would speak to a good pharmacist about the combination. They are the experts on drug interactions.

    Sent from my HD1907 using Tapatalk
  9. Thread: Ear Wax

    by gunnyl
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    Re: Ear Wax

    A few drops of hydrogen peroxide will desolve the wax then flush with a little water. I use a syringe to flush them out.

    Only do this if you don't have tubes in your ears.

    Sent from my HD1907...
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    Re: Telling my story

    John S been traveling the GPA highway for 9 years. Was diagnosed 9 years ago this week.

    Sent from my HD1907 using Tapatalk
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    Telling my story

    I was asked by my Rheumatologist to present my own GPA case and the events leading up to diagnosis to a group of medical students in a couple of months at their annual symposium.

    I was initially...
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    Re: Your Thoughts on Dying.

    Drz,

    As GPA patients we are severely at risk from COVID-19. I personally had heavy lung involvement. For those who are getting rituximab we have the added burden of T Cell depletion which will...
  13. Thread: 7 Years In

    by gunnyl
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    7 Years In

    I'm a little over 7 years into this battle and so far I am keeping the wolf at bay. I've gotten very in tune with my body and changes and have become very adept at knowing early when it's about to...
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    Re: Diet & suppliments

    You should research this site and consult a doctor before taking supplements
    https://www.opss.org/
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    Sticky: Re: How to know when you're having a flare

    For me, I feel like I ran into a brick wall. My ears go through pressure changes even though I had tubes put in for the Eustachian damage. I'll get some nose bleeds, extreme general malaise, pain in...
  16. When I was first diagnosed I, it presented in my...

    When I was first diagnosed I, it presented in my lungs and I was coughing up significant amounts of blood. I have gone through Citoxan, Methotrexate and Imuran mixed with Prednisone. I tend to...
  17. Thread: Weak Nails

    by gunnyl
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    Weak Nails

    Does anybody else have a problem with weak nails? I used to have pretty strong nails but the last couple months my nails rip at an unbelievably annoying pace. I clip them very short but they still...
  18. Thread: methotrexate

    by gunnyl
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    I went straight from MTX to Imuran and cold...

    I went straight from MTX to Imuran and cold turkey off the MTX. You do still need to take the Folic Acid for 4 - 6 Months after stopping the MTX though.
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    Do you like Indian Food?

    Seems some research is being conducted and our disease is almost non-existent in certain parts of Asia. Turmeric has been shown to seriously reduce inflammation and that is a trigger if not a cause...
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    My Ophthalmologist and Rheumatologist will tell...

    My Ophthalmologist and Rheumatologist will tell you that mine are related. Also if you are on long term prednisone use then you should be getting the pressure checked in your eyes regularly as it...
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    I love this disease!

    Went for a checkup with my Ophthalmologist yesterday and came home with Steroid Drops. Seems my flare I was dealing with over the weekend extended to my eyes. I went blind for 7 days causing my...
  22. Thread: Reality Check

    by gunnyl
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    My labs look clean across the board. But I...

    My labs look clean across the board. But I recently came off Prednisone and within two weeks I couldn't make a fist in the morning, all of my joints were painful and swollen and I started getting...
  23. 22--POLY- & MONO-CLONAL ANTIBODIES USED FOR WG (Anybody else seen this?)

    22--POLY- & MONO-CLONAL ANTIBODIES USED FOR WG: (Note - Most not used extensively). A family of drugs coming onto market that promises to...
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    I didn't have any severe hair loss while on...

    I didn't have any severe hair loss while on Cytoxin but my hair growth slowed down substantially. Since I switched to Imuran it has taken off again and made up for lost time. As a guy I kind of...
  25. Annekat, My wife found him and she emailed...

    Annekat,

    My wife found him and she emailed him several times and he always replied. He gave me permission to give his contact information to my Dr's as well in case they wanted to consult with...
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