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    Re: Happy Birthdays Thread

    Happy Birthday Anne- What a great time of year for a celebration.
  2. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    I'll be looking forward to hearing how your infusion goes. I usually take my computer to play around on because it takes so long. I think for a first time infusion they go extra slow if I remember...
  3. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    You have had WG for a year longer than I have. I think we probably have a lot in common from what you have shared so far. I have had allergies to many antibiotics and when I got my first Rituxan...
  4. Thread: Flare?

    by me2
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    Re: Flare?

    I myself am someone whose blood work has never been a reliable indicator. Doctors don't like to treat based on symptoms, which I understand, but for some of us it is just what has to be done. I have...
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    Re: new member with question regarding remission

    Maybe you can make the longer drive just until you get things under control and then manage things closer to home once you are doing better. I myself made a 3-4 hour drive for many years and now use...
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    Re: new member with question regarding remission

    Your whole story sounds like classic GPA I'm surprised that your diagnosis is now in question. Your crusty nose should have given a nice biopsy sample or your lung infilitrate could have. Biopsy is...
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    Re: New here, being diagnosed

    It sounds like you are making good progress and have some good suggestions already. I would add that the steroids are life saving and can help to feel better but they are in no way a primary...
  8. Thread: Donations

    by me2
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    Re: Donations

    I'm over due AND it's a good occassion to remember the Big Kahuna and my other WG friends. I had a recent bit of good fortune so I'm sharing a bit more than usual. All hail Big Kahuna
    Seriously,...
  9. Thread: 20 year old son

    by me2
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    Re: 20 year old son

    Sinus trouble is the most consistent and persistent of WG problems. It can be present even when WG is mostly quiet. Also, with some sinus damage a person becomes more prone to sinus infection. For me...
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    Re: Vasculitis Symposium

    I have been to several and they were all GOOD. Very interesting, well organized.
  11. Thread: Went to duke

    by me2
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    Re: Went to duke

    Alysia , quite right to watch the IgG levels. I had to quit taking Rituxan because of lung infection and my IgG is very low. I will be getting tested again in a couple of weeks to see if it is coming...
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    Re: Happy Birthdays Thread

    Thanks Alysia, Anne, Gilders, Pete and Masha I appreciate it.
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    Re: Rituxan and low antibodies

    Thanks Alysia. Prayers appreciated.
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    Rituxan and low antibodies

    Hello all,
    I have been on Rituxan for several years now. A few months ago I developed pneumonia and was hospitalized several times for it to get IV antibiotics. Then I was put on inhaled...
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    Re: Any virtual workout buddies out there?

    Rituxan can be slow to take effect for some people. I am one of those people. It is a good opportunity to practice patience. Loosing prednisone weight (40 pounds) was also an exercise in patience...
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    Re: Dr. Peter Merkel Philadelphia

    That is good news. Write down all of your questions for him. Saves precious time and also insures you get ALL of your questions answered. It is easy to get side tracked during a meeting. The list...
  17. Re: Will be seeing my doctor to if I have Wegeners

    I had lots of nose bleeds and sinus trouble leading up to getting diagnosed with WG. I was diagnosed with a sinus biopsy done by an ENT. This biopsy is the gold standard for diagnosis of WG. It does...
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    Re: 13yr daughter has Wegeners

    whatthewhat - I had not heard that Rtx and Cytoxan in combination was more effective for pediatric cases. Can you tell me what study that was or point me in the right direction? Thanks
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    Re: 13yr daughter has Wegeners

    There is no way to predict how it will affect her life. Having a WG specialist to help respond to symptoms quickly is very important and it sounds like you are doing a great job with that. I was 19...
  20. Thread: I need some advice

    by me2
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    Re: I need some advice

    It sounds not fun. I have no solutions but it couldn't hurt to try a hot epsom salt bath. The heat and the magnesium might help. I feel for you too about needing something for pain relief and being...
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    Re: GPA diagnosis very recently confirmed

    Welcome. I have to agree with Pete. I don't know of even one person who has been successful with natural treatment. I have had this disease for over 40 years. Health is too fragile and precious to...
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    Re: Probiotics ? No Thanks..

    Interesting articles. There is a lot still to learn about the gut biome. I think I mentioned somewhere here about a diet that I have been on for acid reflux. Specifically a type of reflux called...
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    Re: Probiotics ? No Thanks..

    Alysia,
    Yes, I think it was the combination of antibiotics and low carb. Another possibility is that many months ago I started taking large doses of Vitamin D daily as there was compelling...
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    Re: Probiotics ? No Thanks..

    Thanks for the articles . I find the gut biome to be a very interesting study. It is complex and super important and we are only beginning to understand how it works. I have been dealing with...
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    Re: New member. 57 years old. expecting the best

    Welcome Angie. You will find lots of support and information here. Biopsy not only does work for diagnosis it is the gold standard. There is no better confirmation than biopsy. For those who do not...
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