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  1. Thread: Wegeners charity

    by me2
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    255

    Re: Wegeners charity

    Hopefully someone else will chime in but I know who comes do mind for me right off the top and that is Andrew who runs this site for us. There is a 'donation' thread here and once in a while some...
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    Re: Covid vaccins and WG

    Thanks Alysia.
    In my case the symptoms were very different from WG. Sweats, fever, vomiting, diahreaa, and just extremely sick - very fast. So weak I literally grew worried that I was not strong...
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    Re: Covid vaccins and WG

    I have been tested to see if I currently had Covid and then also tested to see if I had Covid in the past. I asked my doctor if the test is reliable for someone who has VERY low antibodies like...
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    Re: Dull right rib pain

    Like DRZ I have had rib area pain that ended up being nothing. Certainly check it out but don't really worry about it yet. I've learned over the years that MOST often my aches and pains end up being...
  5. Thread: Avacopan

    by me2
    Replies
    6
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    545

    Re: Avacopan

    There is a good chance they will have an access program for patients. Maybe not everyone would qualify but some would. I was prescribed Rituxan before it was FDA approved and my insurance company...
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    Re: Diagnosed with GPA in Bonn - Germany

    Welcome to the club. Thanks for sharing your story. The ear problem you describe is quite common here and I myself have had a lot of ear involvement. In spite of that my hearing keeps returning to...
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    Re: Lowest dose of Rituxan for Wegener's ?

    That's fantastic that you are on 0 prednisone- and at a lower dose of Rituxan.
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    Re: Lowest dose of Rituxan for Wegener's ?

    Richard,
    That information does help. Three months ago my insurance company refused to pay for 1000 mg and said they would only pay for 500 mg which is what I ended up getting. It was intended to...
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    Re: Lowest dose of Rituxan for Wegener's ?

    I've read of 200 mg being used for people with RA. I'm curious of anyone with GPA is on such a low dose. New medications are always done at a higher dose than might be necessary. Lowering the dosage...
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    Lowest dose of Rituxan for Wegener's ?

    As the use of Rituxan is going on for several years now has anyone here used a low dose of Rituxan? I see 200mg as a possible dose in RA studies. Anyone here had a dose that low and at what...
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    Re: Thankful to find this forum

    Thanks for the update. I agree. As a new treatment there is still a lot left to learn and be worked out. Thankfully we have this forum to share information. I have learned more here than I have from...
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    Re: Thankful to find this forum

    Welcome to our hang out Dave. It's a great place for information and the company of people with similar experience. There has never been a better time to have Wegener's. (Gosh, that sounds like I...
  13. Thread: Lung Flare

    by me2
    Replies
    11
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    1,019

    Re: Lung Flare

    What is your treatment plan for the next month? I'm curious. If I would guess I would say increased prednisone maybe 40 or 50 mg- or possibly more for the next month as you wait for the Rituxan to...
  14. Thread: Lung Flare

    by me2
    Replies
    11
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    1,019

    Re: Lung Flare

    When I first had WG it was over 40 years ago. Joints, sinus , kidneys etc- but NO lung involvement. I was in the hospital for several weeks waiting for CTX to kick in as I was in very bad shape.
    ...
  15. Thread: Lung Flare

    by me2
    Replies
    11
    Views
    1,019

    Re: Lung Flare

    A lot of people like to get away for the holidays- but not like this! It sounds like they are giving you a good work up and hopefully get things figured out for you soon. Cat scan information should...
  16. Thread: Haircut

    by me2
    Replies
    12
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    868

    Re: Haircut

    Alysia, you have picked up a new skill during the pandemic. Good for you. I think cutting hair is kind of fun as a hobby.
  17. Thread: Haircut

    by me2
    Replies
    12
    Views
    868

    Re: Haircut

    I'm doing what the Big Kahuna is doing and cutting my own. I even have a name for this style of cut- the Covid Chop.

    Remember when bleached out jeans with holes in them became a big deal? I'm...
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    Re: Abatacept/Abrogate clinical trial

    Does anyone know when this will be available to the general public?
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    Re: Coronavirus and GPA

    I have a decontamination tool that I use on things brought in from the 'outside' and also on my vehicle. I use an ozone generator that I ordered online. It takes a little education to learn the...
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    Re: Coronavirus and GPA

    Hi Anne,

    Thanks for the mask offer. I may later take you up on that but for now I think I'm doing ok. I DO go once a week (or longer) for food and just take extra careful care with mask and loads...
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    Re: Coronavirus and GPA

    I just got off the phone with my infectious disease doctor and wanted to share a little of what I learned. I am a candidate for IVIG therapy based on my low antibodies (because of Rituxan) but she...
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    Re: Coronavirus and GPA

    Hi John,
    I'm not familiar with your whole story so what I say may be of no use. I do an inhaled antibiotic (Tobramycin) at home with a nebulizer. I had pneumonia and this is to help keep my lungs...
  23. Thread: Here I go

    by me2
    Replies
    8
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    834

    Re: Here I go

    That's great news. You are making progress.
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    Re: Specialist in or near KY

    If Cleveland is an option it would be a great choice. Once you have everything figured out (relatively) and are stable you can always look for someone closer to home for more regular care. Then, your...
  25. Thread: Here I go

    by me2
    Replies
    8
    Views
    834

    Re: Here I go

    How have your sinuses been?
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