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Type: Posts; User: norcalian

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  1. Replies
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    Re: Specialist in Sacramento

    There is a lack of rheumatologists in Sacramento. There is a vasculitis clinic at UCSF (San Francisco) about an hour and a half from Sacto. Both Dr.’s Chung and Goglin work there. I have heard really...
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    I'm allergic to Bactrim, so I take Mepron - which...

    I'm allergic to Bactrim, so I take Mepron - which is gross. I have been taking it for more than a couple of years. I have an infectious disease specialist I talk about this sort of stuff with. I got...
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    I had rapid hearing loss right before I was...

    I had rapid hearing loss right before I was diagnosed. A course of prednisone and eventual remission took care of that and I got most of my hearing back. I still have issues with my eustachian tubes...
  4. Thread: ANCA range?

    by norcalian
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    I have Kaiser in the East Bay (I have doctors...

    I have Kaiser in the East Bay (I have doctors from Walnut Creek to Hayward). I know exactly what you mean by the ANCA PR3 results. When I was first diagnosed I was >8 (they stop counting at 8 for...
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    When I first did rituxan, it took almost 4 weeks...

    When I first did rituxan, it took almost 4 weeks from the time of my first infusion before the therapeutic effect began to really kick in. My ANCA dropped to almost 0 and I went into remission. To...
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    I was diagnosed over two years ago. I got off of...

    I was diagnosed over two years ago. I got off of pred about six months ago. I've been on Aza (Imuran) for the duration..always somewhere between 125 and 150mg. My Rheumy said that she would only give...
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    When I was being treated for PCP my Rheumy had me...

    When I was being treated for PCP my Rheumy had me on 40mg of pred (which happened to be about the dose I was on at that time anyway). He said that it was necessary to inhibit the immune system's...
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    Thanks for sharing your experience. It gives me...

    Thanks for sharing your experience. It gives me more hope. I think any singing in any shape or form is great. These days all of my singing is to/with my kids - and they're kind judges of my current...
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    I lost my voice after my diagnosis and time in...

    I lost my voice after my diagnosis and time in the hospital over a year ago. Although I have most of speaking voice back...I still can't sing. I was a classically trained tenor - so this has been a...
  10. I believe they do have tests to check for...

    I believe they do have tests to check for antibodies. I was at a family reunion this year with a brother who had shingles. I checked it with my ID doc who had me tested to see if I had the Chx Pox...
  11. Hey drz - I'm sorry that you're having a rough...

    Hey drz - I'm sorry that you're having a rough time with the desensitization. We talked a bit about all of this before...I'm hoping to go through the process myself sometime in the near future, so I...
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    I think the general consensus is that when you're...

    I think the general consensus is that when you're labs look good and you feel good that you are probably in remission...if not just for the sake of how to move forward with treatment goals....
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    My new rheumy told me in my last appointment that...

    My new rheumy told me in my last appointment that they try for drug-free remission once and then if I flare as a result of being without drugs I will be placed on maintenance drugs (most likely AZA...
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    My ID Doc took me off Cozaar when I was in the...

    My ID Doc took me off Cozaar when I was in the hospital for PCP. originally I thought it was to deal with my orthostatic hypotension. But later he said he would keep me off of it because of my...
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    Multiples times my wife and I have compared pred...

    Multiples times my wife and I have compared pred side-effects to being pregnant...without all the labor at the end.
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    I'm taking 480mg(I think - it's the maximum daily...

    I'm taking 480mg(I think - it's the maximum daily dose anyways) of Verapimil. I was on Cozaar but my ID doc took me off it the last time I was in the hospital. my last appt my blood pressure was...
  17. I think the whole Tebow/Denver thing is pretty...

    I think the whole Tebow/Denver thing is pretty fun. I would root for Denver if I weren't such a huge Niners fan. Anyway, the chance of them meeting in the post season is about the same as me getting...
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    My blood createnine levels have been slowly...

    My blood createnine levels have been slowly rising over my past couple of blood tests as well (my last test was at 1.42 mg/dl - which isn't much...but it's trending up, which is disconcerting). The...
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    I couple of months ago, my rheumy suggested I...

    I couple of months ago, my rheumy suggested I start taking Ubiquinol CoQH with Kaneka (you can buy it through VitaCost). Shortly after I started taking it, my energy levels improved noticeably (it...
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    When I asked my rheumy what my prognosis was he...

    When I asked my rheumy what my prognosis was he wouldn't give me a straight answer (I now understand that there isn't a static prognosis for this disease - only the individual nature of everyone's...
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    Hey Daggar - good to hear from you. Glad to hear...

    Hey Daggar - good to hear from you. Glad to hear that Holly is doing so well. I hope her tests go well and that she has a long remission. Take care!
  22. I'm sorry you're having a rough day. It would be...

    I'm sorry you're having a rough day. It would be frustrating to feel like you're having a flare when you have so many other things you want to do. it feels weird saying this, but here's to hoping you...
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    Hey Dirty Don, My pulmonologist thought I had...

    Hey Dirty Don,

    My pulmonologist thought I had Valley Fever before I was diagnosed with WG. I took the anti-fungals for almost ten days until the second Cocci Titter came back negative. At that...
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    Happy Birthday Andrew!! Thanks for all you do!

    Happy Birthday Andrew!! Thanks for all you do!
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    Sounds like the China study. We had some friends...

    Sounds like the China study. We had some friends who tried veganism after reading that book. It's a little extreme for us.

    Since we're talking about documentaries...Has anyone seen "Fat, Sick and...
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