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  1. Re: Any virtual workout buddies out there?

    Good enough! Thanks for inquiring! Dr. Villa Forte is good at getting to the point. She has set up a plan for me to get RTX in 1 500 mg infusion every six months in preventive doses. Will this work?
  2. Re: Rituxan therapy and IgG, IgA, and IGM immunoglobulin labs

    He's had all of the tests and everything came back normal. Now what?
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    Re: Sinus Congestion

    I don't take any of the above anymore. Have discovered through trial and error that none of these work. Antibiotics & Prediisone make things drastically worse, albeit helping in the short term. The...
  4. Re: Any virtual workout buddies out there?

    Thanks Andrew! It is indeed taking time to work. I've now been placed on a 500 mg infusion every six months and hoping it can be scaled back after some time. Encouraging to believe you may be one of...
  5. Re: Any virtual workout buddies out there?

    Very funny! i didn't mean to name drop - but I guess I'm guilty! Haven't tried Tai Chi - just intense Tibetan Buddhist philosophy and meditation. Mindfulness practice as taught by His Holiness is the...
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    Re: Second Opinion

    This is a huge problem - dealing with medical professionals who know nothing about vasculitis. More common than I care to belabor! I'm so sorry your daughter is sick - not easy! Just because she has...
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    Re: Cold, flu or flare

    No frank Colitis or symptoms. Abdominal pain, suspected liver involevment (based on past scans, labs). Also now suspect kidneys, as having severe colicky pain over both kidneys. Happy I will be in...
  8. Re: Any virtual workout buddies out there?

    Tai chi sounds great! So far I've done yoga and meditation which have both helped. I'm a student of the Dalai Lama of Tibet - have taken direct teachings with him four times when living in Los...
  9. Re: Any virtual workout buddies out there?

    Good for you! I can't wait to get back to exercise! Do yoga, walk 2 miles a day, do exercise videos - anything to keep in shape. Also do many hours of meditation. In miserable mess now - gained...
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    Re: Cold, flu or flare

    Thanks so much for thinking of me & sending info on Dr. Stephen Capizzi. I actually ran across his info myself and called for an appointment. Found out he limits his practice to Pulmonary vasculitis...
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    Re: Cold, flu or flare

    Nowhere to go here in Nashville Medical people are so clueless here would not submit to a useless ER visit although I would likely qualify for ICU sick Have to make it until visit at Cleveland clinic...
  12. Re: Paleo auto-immunity diet (The Autoimmune Protocol)?

    On Ketogenic diet - no sugar, very low carbs, high fat. It works!
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    Re: Ancestry

    Interesting! My husband and I found out from genealogy research that we descend from the same Puritan pair of ancestors from earliest Massachusetts colony. Cousins - distant but still. His family...
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    Re: Ancestry

    Yes. Genealogy has been a computer hobby for decades. Around the time I got sick I got bored enough to spend part time at it. Pretty mind boggling. My Maternal grandfather I believe died of...
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    Re: Cold, flu or flare

    This is true! But oh those interminable 7-10 days waiting and feeling as if the world may be coming to an end.

    Oh well, most of us are so accustomed to the return of suffering again and again...
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    Re: Building Resistance to Rituxan

    If I’m reading the 2014 study for the French Vasculitis Study Group Dr. Guillevin appears to recommend RTX. Will look into his other research. Thanks.
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    Re: Cold, flu or flare

    Thanks John.
    I was unable to get appts with Dr. Calabrese or Dr. Langford so made appts with Dr. Villa-Forte. What is she like? How should we prepare for the culture shock of appearing in Cleveland...
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    Re: Strict Dieting

    Hi John,

    Lucky you, I believe! As my liver goes haywire in relapses I usually gain weight.
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    Re: Cold, flu or flare

    Lucky you! Two major heavy hitter specialists! We have no one to call. I’m in touch with Dr. Calabrese at Cleveland but he has “suggested” we see a Vanderbilt Rheumatologist who appears to be...
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    Re: Cold, flu or flare

    Best to you Masha and John. Let me know if I may be of support. One Rituxan infusion down, 1 to go. The. First time i’Ve had 1 gram every 2 weeks. No one qualified is following my care locally. May...
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    Re: Cold, flu or flare

    Unfortunately sed rates don’t reliably go up in relapses (although you would think they would!). Also, take it from experience, to treat ourselves with prednisone is both potentially dangerous and it...
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    Re: Cold, flu or flare

    All this discussion regarding nasal crusts and flares is too familiar. It appears from this thread that we all have to be wary of the opinions of Vasculitis-ignorant physicians - and from personal...
  23. Re: The scariest 14 months of my life and then Wegeners

    This is all familiar!You're right, CT scan of the sinuses is very important. Both my son & myself have had severe sinus disease (CT scans, MRI's, etc.) and persistent rhinitis. Must say we've avoided...
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    Re: Strict Dieting

    You bring up a great point regarding Cholesterol! Unfortunately our doctors (like most everyone else) are uninformed/uneducated about nutrition. The new science on nutrition indicates that a...
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    Re: Strict Dieting

    Agree Prednisone is unwarranted over long time periods (or perhaps at all). As patients who have been treated with prednisone, we no longer agree to take it at all. We’re successfully on Rituxan but...
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