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  1. Thread: Wegeners charity

    by drz
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    Re: Wegeners charity

    The Vasculitis Foundation also has some good educational webinars and fund raising events too. They are a good resource for us.
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    Re: Covid vaccins and WG

    How are you doing now? Hope you are improving!:unsure:
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    Re: Covid vaccins and WG

    My GPA doctor said same thing. Too early to tell but by the time they are available in a few months there should be more info on what is safe and what is likely to be most effective for us suppressed...
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    Re: One year in, greetings from Australia

    Welcome to our elite group. Sorry you had to qualify for admission, but I'm very impressed with the good medical care that you got in a quick diagnosis and getting appropriate treatment. You are very...
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    Re: Ear, Nose and Eye involvement.

    These are all frequent and common symptoms of GPA and many of these will persist even when you will be considered in remission. Those of us who have been dealing with GPA symptoms and been in...
  6. Thread: Nose Bleeds

    by drz
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    Re: Nose Bleeds

    Nosebleeds are usually the first symptom I have of my GPA residual symptoms flaring or increasing when I try to cut my prednisone dosage down too low. They were also my first indication and first...
  7. Thread: Need a referral

    by drz
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    Re: Need a referral

    The info and thought is still valid today.
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    Re: Wegeners and now CLL

    Sorry to hear about your dual diagnosis. I was told after my initial treatment for Wegener's granulomatosis that I would be at high risk for several forms of cancer because of the treatment I...
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    Re: COVID 19 treatment recommendations

    October 7, 2020
    Updated guidance on the management of COVID-19 from an American Thoracic Society/European Respiratory Society coordinated task force

    An International Task Force convened by the...
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    Re: COVID 19 and Wegener's - risk of infection

    OCTOBER 13, 2020
    Patients with mild, moderate COVID-19 unlikely to be infectious after day 10 of symptom onset
    By Denise Baez

    NEW YORK -- October 13, 2020 -- Patients with mild to moderate...
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    Re: COVID 19 and Wegener's - and autoimmune disease

    October 15, 2020
    Increased risk of COVID-19 in patients with autoimmune diseases, glucocorticoid use plays a role: Study

    By Denise Baez

    NEW YORK -- October 15, 2020 -- Patients with autoimmune...
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    Re: New member from Canada

    It seems very good that you were able to get diagnosed after only having a few months of symptoms. Many of us had to go a few years. We often refer to our "new normal" which varies greatly from...
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    Re: Dull right rib pain

    I have had pains in the past in my rib area but have no idea if they related to my GPA or my many other health issues. Sometimes it was diagnosed as an inflammation in the lining and sometimes they...
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    Re: Flu shot or not during COVID 19?

    I've been getting my flu shot every year to for several years. My doctors asked me if I have ever had any problem with the shots and so far I haven't. They tell me once I have a problem with it then...
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    Re: COVID 19 and Wegener's - musings Vacine progress

    This might be helpful for us? The big question is how a vaccine works and if it will be safe and effective for us people with a suppressed immune system.

    September 30, 2020


    ...
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    Re: COVID 19 and Wegener's - musings Easier form of testing for Covid-19

    September 29, 2020



    Self-collected saliva test could detect silent SARS-CoV-2 carriers
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    Re: COVID 19 and Wegener's - musings: Using dogs to screen for Covid-19

    But now, the Helsinki Airport is doing one better: Itís hiring a team of dogs, trained to sniff out COVID-19, to screen passengers.
    Dogs have already proven their ability to sniff out diseases...
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    Re: Lowest dose of Rituxan for Wegener's ?

    An ideal goal would be to reach a maintenance dosage of zero, but unfortunately that is not attainable for most people. Many people find they need to continue taking some type of immunosuppressant...
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    Re: Diagnosed with GPA in Bonn - Germany

    Sorry you had to join our distinguished elite group but glad you were able to find us because this is probably the best source of information and support available.

    Several other people who have...
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    Re: COVID 19 and autoimmune conditions

    Glad to hear you feeling quite well. I wonder what projects or travels have occupied your time.I enjoyed hearing aboaut your travels and projects. Any new cars being restored. Keep on keeping on.
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    Its hard to understand.

    I went to the farmer's market today to buy some baked goods. Very few people were wearing a mask. And they were not keeping a safe distance either. I did the best I could to stay safe and left...
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    Re: Coping with stress on current pandemic

    Vaccine expert Dr. Peter Hotez on Friday predicted the coronavirus will continue to plague the United States “for years and years, even after vaccines are out and we get people vaccinated.”

    ...
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    Re: Wegener's and surgery

    It depends upon the type of surgery. If there is no blood involved like a cataract surgery, they let me do that one fairly quickly. But to get my BAHA inserted I had to be in remission for a year....
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    Re: COVID 19 and autoimmune conditions

    "I question their conclusion. If we are no more likely to get it, I would think it due the fact that we are more fearful for good reason and therefore much more careful than other people."DRZ
    ...
  25. Thread: Covid-19

    by drz
    Replies
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    946

    Re: Covid-19

    I get several medical alerts each day with summaries of various studies. Now about half of them deal with Covid-19. There was a small one today again discussing how steroids had been used in...
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