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Type: Posts; User: morningsunshine

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  1. Replies
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    Re: Building Resistance to Rituxan

    Hi whatthewhat!
    I?m sorry to hear that your daughter has this disease, but she?s lucky to have you doing research and keeping on top of it!

    It?s definitely encouraging to hear that some people...
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    Building Resistance to Rituxan

    Hi everyone,
    Has anyone built up a resistance to RTX?

    I?ve been on it for 4.5 years now (2000mg every 6 months) and I?ve noticed GPA symptoms come back towards the end of the 6 month intervals....
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    Re: Rituximab Assistance?

    Hi there! I've used the Rituxan RA Co-pay card for all of my RTX copayments for the last two years.

    I think perhaps you applied at the wrong site--there are separate co-pay cards for patients...
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    Re: Specialist in Sacramento

    I was unable to find any specialists near me in NorCal, so for the last year I've seen Dr. Goglin at UCSF. I like her a lot! I feel like she takes her time, listens to my concerns and follows up...
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    Re: Lung nodules

    For me, lung nodules are a clear sign of disease activity. When I was diagnosed and before each of my relapses I've had them show up on xrays and CT scans and when I'm in remission, they disappear...
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    I've been dealing with this lovely condition for...

    I've been dealing with this lovely condition for 3 years and am on RTX for maintenance. I relocated to NorCal from the East Coast and started seeing Dr. Goglin at the UCSF Vasculitis Clinic about 6...
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    I did this when I first got diagnosed: had 4...

    I did this when I first got diagnosed: had 4 doses of rituxan (each dose one week apart), and then went on MTX for maintenance. After 9 months I relapsed, so my doctor took me off the MTX, gave me...
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    Thanks to both of you! I sent each of you a...

    Thanks to both of you! I sent each of you a private message :-)
  9. Replies
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    Thank you so much for responding and recommending...

    Thank you so much for responding and recommending Dr. Chung. I have looked at her profile, but it's so hard to tell what kind of doctors they actually are just based on an online profile. I'm doing a...
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    Any friends in Northern California?

    Hello, fellow weggies!

    I moved a couple of months ago from the East Coast to NorCal. I was originally planning to keep my health care over there, but after traveling back for some RTX infusions...
  11. Thanks, Mike! I really appreciate the details...

    Thanks, Mike! I really appreciate the details about the waterpik. I think I'll try that first, and also see what my ENT has to say in person next week.

    Thank you again for your help!
  12. MikeG: where did you learn to use a waterpik? I...

    MikeG: where did you learn to use a waterpik? I do daily sinus rinses with a squeeze bottle, but have never had any coaching. (also, I'm coming off a pred taper from 80mg to 5mg and the inflammation...
  13. Thanks to you both! I'm still debating the...

    Thanks to you both! I'm still debating the procedure and I'll let you know what I decide.

    I do daily (morning) sinus rinses and its amazing how much they help. I also just moved from sea level to...
  14. Balloon Sinuplasty -- any experiences?

    Hi Everyone!

    A recent CT scan of my sinuses uncovered "chronic inflammation" of my left sphenoid sinus. My ENT is recommending balloon sinuplasty to reshape that sinus and reduce inflammation.
    ...
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    Hi there! I am also in RTX-induced remission,...

    Hi there!

    I am also in RTX-induced remission, using RTX and prednisone (my last four infusions were in April). I've noticed in the last few weeks that my thinking is not as clear as it normally...
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    Hi Joni! I'm 27 and was diagnosed at age 26,...

    Hi Joni!

    I'm 27 and was diagnosed at age 26, so I'm kind of close to your son's age. Speaking from my experience, the best thing my mom has done for me to "make it better" has been to simply...
  17. New potential drug for ANCA-Associated Vasculitis: Bortezomib

    I like to stay on top of the potential new drugs that are being developed and I ran across this one: Bortezomib. They tested it on one patient with microscopic polyangiitis and she was able to stay...
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    Hey there! First of all: kudos to you for taking...

    Hey there! First of all: kudos to you for taking an active interest in your treatment options and for seeking out research.

    You asked for articles and so here is some recent research on Cytoxan...
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    Congrats!!! This is great news!! :thumbsup:

    Congrats!!! This is great news!! :thumbsup:
  20. Hi Bob, I came across this article about the...

    Hi Bob,

    I came across this article about the Epidemiology of Vasculitis and thought it might be interesting for your research. It's about descent rather than geographical area in which you live,...
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    Thanks! Yeah, defining "success" is a challenge...

    Thanks! Yeah, defining "success" is a challenge in any case--especially when Wegener's has you in it's grip and you don't know what is a side effect of medication, what is the disease itself, and...
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    I got a cataract in my right eye after about 6...

    I got a cataract in my right eye after about 6 months of high-dose prednisone use. My opthalmologist is keeping an eye on it and she said I would need surgery within the next 10 years.
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    I've been doing the Autoimmune Protocol (AIP) for...

    I've been doing the Autoimmune Protocol (AIP) for 8 weeks now. The point of the diet is not to "cure" any disease, but instead to reduce inflammation in the body and help the body heal. I started the...
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    Sending lots of love to her, you, and the rest of...

    Sending lots of love to her, you, and the rest of your family during this time.
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    I intentionally go out walking in the sun (when...

    I intentionally go out walking in the sun (when it's there) for 15-20 minutes a day to get some vitamin D!

    i'm on Bactrim 3x/week which supposedly causes photosensitivity, but I haven't noticed...
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