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  1. Another weggie warrier, Patti Peterson Sullivan, has gained her heavenly wings.

    Not sure if this news has already been posted but Patti Peterson Sullivan recently passed away. I just talked to her husband and he told me she had contracted Covid and her lungs couldn't handle the...
  2. For the first time ever, I've created tolerance to self

    The threat of being on preds for the rest of my life is highly motivating. RTX has a hard time crossing my blood brain barrier. It's like Arnold Schwarzenegger trying to enter your home through the...
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    Rethinking Fish Oil

    I recently got turned down for a second generation B cell depleting drug. It hasn't been officially approved for WG and the subjects in the one small study developed an allergic reaction to RTX....
  4. Re: It's Obinutuzumab or Bust! Second generation anti-CD20 monoclonal antibodies.

    Thank you Pete. Have a great holiday!
  5. It's Obinutuzumab or Bust! Second generation anti-CD20 monoclonal antibodies.

    I just had a great meeting with my vasculitis doctor. Time has been running out for me for a long time. I barely made it to the third month after my latest RTX infusion. Three rounds of Solumedrol...
  6. This is shocking! Cracking the resistant RTX case wide open

    This is shocking! They may be hurting me more than helping me.

    There are two kinds of weggies in this world. Weggies that have infusion reactions to RTX and those who don't. Likewise, these same...
  7. Before there were preds, there was pregnenolone.

    The way the story goes, the pharmaceutical industry couldn't patent pregnenolone, because it was a natural substance. Their response to this little problem was to develop glucocorticoids.
    ...
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    How do I delete a thread I posted?

    I pressed some kind of wrong button and a thread I started got sent out with a mistake in the title. Can't find any way of deleting that thread or even editing the title. Kind of wanted to start all...
  9. If you have GI, brain, eye, salivary gland, seizures, headaches or CFS issues

    T-regs regulate our immune system to prevent out of control immune activation. "FOXP3+ regulatory T (Treg) cells are critical in maintaining immune tolerance and homeostasis of the immune system."
    ...
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    Is Wegener's a mitochondrial disease?

    True story!

    During my recent relapse, my rheumy was testing my Creatine Kinase. I hadn't had it tested since before being diagnosed. My CK levels were low, but I thought it was from losing so...
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    Salivary Gland Involvement?

    Spent seven hours in an emergency room, with what I originally thought was a swollen gland, from a recent low lymphocyte count, after four infusions of Solumedrol/RTX. Ended up being a blockage in my...
  12. Re: Melatonin supplementation is possibly like feeding Wegener's a candy bar.

    Mayo Clinic flat out recommends not taking melatonin with an autoimmune disease. Since they are the number 1 hospital in the world, I put a lot of stock in their opinion.

    "Melatonin can stimulate...
  13. Re: Melatonin supplementation is possibly like feeding Wegener's a candy bar.

    I was taking 5-7mg's of the cheapo Walmart melatonin, until the VA gave me 5mg of prescription strength melatonin. Normally, our bodies produce much less than that. And you're very welcome. I usually...
  14. Melatonin supplementation is possibly like feeding Wegener's a candy bar.

    I'm relapsing badly this weekend. A couple of months ago, a doctor prescribed prescription strength melatonin for my sleep disorder. It's been down hill ever since. Seeing my neurologist Tuesday,...
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    Rituximab and gastro-intestinal problems

    Colitis Associated With Rituximab in 21 Patients at a Tertiary Center"Rituximab has been associated with numerous adverse gastrointestinal effects including diarrhea and bowel perforation, and recent...
  16. Courtesy of Vasculitis News ___Hot of the presses

    Blood levels of SOD, an antioxidant enzyme, could mark AAV activity
    https://ancavasculitisnews.com/news/sod-blood-levels-mark-anca-associated-vasculitis-activity/

    Genetically, I don't make enough...
  17. Re: Soybean oil and Wegener's - Is the food industry killing us?

    Case in Point – Eggs


    Linoleic Acid is an omega-6 fatty acid.


    "Testing by Pennsylvania State University and the USDA showed pastured eggs contain 2 times the long-chain Omega 3s, 2.5 times...
  18. Soybean oil and Wegener's - Is the food industry killing us?

    54% of the omega-6 fatty acids in soybean oil are in the form of Linoleic Acid. In the body fat tissues, Linoleic Acid is converted to Arachidonic Acid. Since 1955, Linoleic Acid in human adipose...
  19. Low Complement Factor H and disease activity in AAV

    Complement Factor H helps regulate the complement alternative pathway. Genetically, I have lower levels of Factor H, which makes my complement system become dysregulated and activated. Keeping up...
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    Re: Weggie's Lounge Update

    I'll pop in every now and then. Nice to connect again. Hope everything is going well. I'm enjoying my slower pace of life. :cool1:
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    Weggie's Lounge Update

    I disconnected from Facebook but continue on with my WG discoveries.

    Over the past few years, I've been debilitated with bouts of pancreatitis and bowel problems. Recently, I discovered the statin...
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    Re: Reactions to Covid-19 vaccinations

    I have over 45 years experience with vaccines and adverse events. Off the top, I will never have another vaccine for the rest of my life. This all comes down to human evolution. Instead at looking at...
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    Toll Like Receptor major break through

    For the longest time, having dysfunctional T-regulatory cells was a hallmark of WG. Much has been learned after the 2011 Nobel Peace Prize in medicine. More recently, it's been determined that...
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    Re: Covid vaccins and WG

    There are a couple of things that give me pause. No mRNA vaccine has been approved for human use. From what I understand, all autoimmune subjects actively on immune suppression drugs are excluded...
  25. Re: Searching for anybody that has connected their WG to vaccines.

    I'd like all of us to get together, so that we can compare notes. I also had a very bad reaction to the 2011/2012 flu vaccine.
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