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  1. Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Hi,
    I'm not in the study but congrats to getting in.

    Phase III Avacopan Clinical Trials are expected to be published in December. ...
  2. Re: Dr. Peter Merkel Philadelphia

    Here he is giving a wide overview of research in Vasculitis. https://youtu.be/VjRUvcJIr34
  3. Trials Advocan? CRSPR CAS9? Cure?

    Hey Weggers! Long time away but still alive and firing my rabbit hole gun!

    Reading about at CRSPR CAS9 treatments for Anca Associated Vasculitis (GPA/Wegs ANCA type illness) which led to Advocan...
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    Feedback appreciated. Thx. I feel ok. No...

    Feedback appreciated. Thx.
    I feel ok. No remission but not in a flare either. Sick every day but grateful to have a day. I think you're right. The docs tone was assertive but caring so I thanked...
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    Hey Weggies! If possible, I could use some...

    Hey Weggies!

    If possible, I could use some help.

    I hope everyone is doing well. Excellent / helpful thread. Thanks much. it is timely for me.
    I refused maintenance medication a few months...
  6. Hi Mama Endora, I'm sorry to hear about this...

    Hi Mama Endora,

    I'm sorry to hear about this illness with your daughter. It sounds like a long struggle but that you now have definitive diagnosis?
    I was misdiagnosed for two years. It was such...
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    Security suggested I bring the pill bottles in a...

    Security suggested I bring the pill bottles in a clear plastic bag. They saw them but never checked anything.
  8. Hi Audreya - keep the faith! Don't get...

    Hi Audreya - keep the faith! Don't get discouraged! Where there is life there is hope.

    My kidneys got hammered for 2 years and I was totally untreated. By the time the docs figured out what was...
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    Wow. Super Mom! Thanks for the info and I'm sorry...

    Wow. Super Mom! Thanks for the info and I'm sorry your son and your family had to endure such an ordeal.

    If I kept on eating meat I wouldn't have survived. But eliminating pesticides and dirty...
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    Work Shame. Don't buy it. Wegeners is a...

    Work Shame. Don't buy it.

    Wegeners is a serious illness. Not working and maintaining health is a FULLTIME job.

    I worked sick for 7 years till nearly dead. Then worked more til nearly dead....
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    Hi Becky, Basically, if they serve it at a...

    Hi Becky,

    Basically, if they serve it at a hospital, don't eat it.

    I used to drink tap water but found that RO filtered water makes a big difference. Culligan has an advanced Reverse Osmosis...
  12. 2496 The other day on the phone somebody asked...

    2496
    The other day on the phone somebody asked me how I feel. Irritated with a tailgater, instead of the usual patent answer I blurted, "Like a bird pooped on my birthday cake!" but then I realized...
  13. Hi Teri - Hang in there. It may be worthwhile. I...

    Hi Teri - Hang in there. It may be worthwhile. I was told Rituxan gains slowly and takes a few months to peak efficacy and then wanes. I did two infusions / two weeks apart and then again 6 months...
  14. Thanks Alysia - I'll ask about Leflunomide -...

    Thanks Alysia - I'll ask about Leflunomide - Arava today. I have liver damage so that may why they don't suggest that one. Cellcept was ruled out and Imuran made me worse. When the wegs was in the...
  15. Thanks Everyone! Lets just pretend that "no...

    Thanks Everyone! Lets just pretend that "no chemo" statement was a test! Can't abandon science with this crew! Ha! Yes! Proud of my weggies!

    Pred is holding for now, despite CNS, lung, eye, sns...
  16. Thank you. Oceanic tails from the wegs afflicted!...

    Thank you. Oceanic tails from the wegs afflicted!
    Well, it's pretty cool that I'm not hearing people saying, "Yes. I live near the ocean and my Sinus and Lung involvement is severe or worse."
    ...
  17. Ocean Air - Sinus and Lung Effects

    Hi Weggies!

    Im curious how many people who are exposed to daily ocean air have had severe sinus and lung involvement?

    Evertime Im on the ocean it helps.

    Tom

    Sent from my SM-G925V using...
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    It made me very fatigued. Sent from my...

    It made me very fatigued.

    Sent from my SM-G925V using Tapatalk
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    Hi Michelle, UPENN is a good place to get tx....

    Hi Michelle,

    UPENN is a good place to get tx. I'm sure they will know how to help. Rituxan has worked well for many people, with less overall harm than Cytoxan.

    Rituxan had "negligible...
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    Thanks much for keeping it going. I'm sure you're...

    Thanks much for keeping it going. I'm sure you're not doing it for the money!
    Tom
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    Hi Marli, Great suggestions so far, I would...

    Hi Marli,

    Great suggestions so far, I would just add that cytoxan can cause bladder issues so be sure to talk to the doctor about ways of protecting the bladder.

    Wegs nearly took me a few...
  22. Hi Anaziz, The pace of the pred reduction may...

    Hi Anaziz,

    The pace of the pred reduction may be intentional, even though it is faster than many of us would do. I would ask the doc.
    I take propranolol when the pred gets ugly and it helps me...
  23. Taken PROVIGIL or LAMICTAL?

    HI Weggies!

    Has anyone taken

    PROVIGIL?

    Or

    LAMICTAL?
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    Sticky: Hi PANDASmomx2- Sure, thx, glad if it helps. It a...

    Hi PANDASmomx2- Sure, thx, glad if it helps. It a starting place. Anything can be added. I just like it because I can see the whole month on one page. If I highlight just the wegs activity over a...
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    I would reread the listed side effects for rtx....

    I would reread the listed side effects for rtx. Wegs can jump a little after infusions for some people. It always does for me.

    My back pain increased. Each rtx infusion I had triggered some sort...
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