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  1. Thread: Anyone in Atlanta?

    by jmq
    Replies
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    2,051

    Re: Anyone in Atlanta?

    Hi Kathy,

    Sorry I am just reading this message. Working all day today (7/27) in Kennesaw so my schedule is very limited. Are you in ATL through the weekend or at least tomorrow? Tomorrow I am...
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    Re: Rituxan maintenance

    Thatís totally consistent with what Iíve heard.
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    Re: Rituxan maintenance

    Hi,

    What you describe is what I have and go through. I am 56 years old. My disease started in my lungs and they diagnosed it pretty quickly (in about 9 months). It was also affecting my...
  4. Thread: Anyone in Atlanta?

    by jmq
    Replies
    7
    Views
    2,051

    Re: Anyone in Atlanta?

    Hi Kathy,

    Thank you for responding. I have family in Florida. Maybe, next time I go down to visit, I can call you to see if it's convenient for you to meet. Or we could meet half way?
    Not sure...
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    Re: In need of new rheumatologist in Atlanta, GA

    Thanks Pete. That's very helpful. I plan on charting those as well. Although Villa Forte has always told me that just the numbers are not a good indicators of a flare so not to act too quickly on...
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    Re: In need of new rheumatologist in Atlanta, GA

    Pete,

    They do all those blood test panels you mention on me as well as the urinalysis. Which are the specific test/numbers you monitor the trend of that are more the true indicator that you are...
  7. Thread: My introduction

    by jmq
    Replies
    20
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    2,813

    Re: My introduction

    Yes, I agree with Alysia. That's what they did last week when I had my rituxan again (2nd time this year). I go for the 2nd round of the 2nd infusion this Thursday. I'll pay attention to what...
  8. Thread: My introduction

    by jmq
    Replies
    20
    Views
    2,813

    Re: My introduction

    Hi Ellen,

    Welcome. I had a similar introduction to this disease as yours. I had never been sick in my entire life before this hit me. Was also diagnosed as a pneumonia with masses in my lungs....
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    Re: In need of new rheumatologist in Atlanta, GA

    Pete,

    What about your lab work, who monitors your ANCA markers through the year? and how often do you get blood work done?
    Do you have the infusion regardless of what the blood results are?...
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    In need of new rheumatologist in Atlanta, GA

    Hi there,
    My rheumatologist here in Atlanta, GA fired me because I went to the Cleveland Clinic to consult with Dr. Villa Forte twice. She told me I couldn't have two rheumatologists and told me...
  11. Thread: Anyone in Atlanta?

    by jmq
    Replies
    7
    Views
    2,051

    Anyone in Atlanta?

    Hi,

    Is there anyone with Wegener's GPA in Atlanta, Georgia, USA who would be interested in meeting up?

    Jeannette
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    How do you know the ANCA-producing B cells are...

    How do you know the ANCA-producing B cells are being depleted? Is it a blood test?
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    blm and Gab122, I just stumbled upon your...

    blm and Gab122,

    I just stumbled upon your messages searching for neuropathy. Not sure what has happened since you wrote this but here's my reply in case it helps anyone.
    I have that face...
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    Thank you Jana. I really do hope you find some...

    Thank you Jana. I really do hope you find some answers too soon.
    So, your SFN has not been relieved by anything? How do you deal with it?

    I was thinking I have SFN because it sure sounds...
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    Thank you all for all your replies and reassuring...

    Thank you all for all your replies and reassuring messages. I will try to be more patient and reset my expectations with the Rituxan treatment timing. Looks like it has worked for most of you and...
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    Pete, Thanks for sharing. So, my nerve...

    Pete,

    Thanks for sharing. So, my nerve issues are actually my worst symptom right now and it's getting very debilitating. I have major numbness, tingling, nerve pressure/pain like my feet are...
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    Thanks Pete! Great idea! I will follow your...

    Thanks Pete! Great idea! I will follow your advice and call Villa-Forte's office on Monday. I will let them know that I will be traveling from Georgia and it would be nice if I need a...
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    Hi Jana, Yeap, sounds lie we are on the same...

    Hi Jana,

    Yeap, sounds lie we are on the same drugs. A lot of the same symptoms with the nerve issues. How about prednisone? How much prednisone are you on? I know you are done with RTX...
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    Jana, Sorry to hear about all your are going...

    Jana,

    Sorry to hear about all your are going through. I hope you find real answers with your cardio issues and feel better soon!
    I feel your pain.

    I am heading to CC at the beginning of...
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    Poll: loisann and alysia, I share your experience...

    loisann and alysia,

    I share your experience and concerns. just finished my 2nd infusion of RTX as well. No difference in symptoms yet. On 60mg of prednisone daily which barely controls my...
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    Poll: Alyssa, I share your experience and concerns. ...

    Alyssa,

    I share your experience and concerns. just finished my 2nd infusion of RTX as well. No difference in symptoms yet. On 60mg of prednisone daily which barely controls my connective tissue...
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    Would you care to explain what b-cells are and...

    Would you care to explain what b-cells are and how they help me?

    What blood work do they have to do to get this B-cell presence?

    sorry I am very new to this disease but it's moving very...
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    Omg! That's such a long time! I don't think I...

    Omg! That's such a long time!
    I don't think I can stand the nerve pain plus the side effects of the high doses of prednisone for that long.
    What else can they do?
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    Hi, I also have questions about Rituxin...

    Hi,
    I also have questions about Rituxin treatment.
    I just started Rituxan treatment 2 weeks ago. I just had my second infusion yesterday. I am scheduled to have 4 infusions so I am half way...
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    GPA Specialists - Atlanta or nearby Area

    Hi
    I just posted an intro yesterday. I live in Atlanta, Georgia, USA.

    I am thinking I need to find a doctor that is a specialist in GPA. My rheumatologist has been great and she has been very...
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