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    Re: Vasculitis Symposium

    I have been to several and they were all GOOD. Very interesting, well organized.
  2. 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...
  8. 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...
  11. 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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    Re: Rituxan maintenance

    Loisann11- My doctor has said to me that he would like to keep me on full treatment for two years that is not interrupted by a flare before thinking about backing off.
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    Re: Rituxin after effects

    I would be surprised if you were NOT having a more difficult time with Rituxan after just having surgery. We can only take so much stress to the body and it starts to snow ball.
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    Re: some gpa symptoms- ENT advice

    I have had GPA for about 40 years. I have never had a positive ANCA test. Biopsy is a better test for GPA.
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    Re: some gpa symptoms- ENT advice

    I had sinus problems several years before being diagnosed with a nasal biopsy. If it is GPA do not be comforted by the fact that the symptoms are mild. This can change extremely fast as it did in my...
  21. Thread: First Flare?

    by me2
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    Re: First Flare?

    Don't be too reluctant to do Rituxan. Prednisone is worse for you than Rituxan. If Rituxan can get eventually get you off prednisone it is a good deal.
  22. Re: Has anyone been treated with "Decadron"? (Dexamethasone)

    I'm not very familiar with Decadron but in looking it up I see it is a synthetic corticosteroid similar to prednisone. I don't believe it would be considered a primary treatment for a flare. My own...
  23. Thread: Wegeners is back!

    by me2
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    Re: Wegeners is back!

    I have had colds while on immune suppressants and for me it was no different than usual. Which is still plenty miserable. Take good care of yourself.
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    Re: Past lab results - important? YES

    Hi Helen,

    Many of us here would love to hear your story. I can see you have been through a lot and have a lot to share. In the upper left corner of this page click on "Forum". It will go to a...
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    Re: Changing irrigation tools?

    My most recent change in irrigation is to get a sinus culture to identify possible infection. I seem to have had infection along with the weg crusting more than I thought. Then get an antibiotic...
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