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Thread: Constant gross mouth taste - med side effect?

  1. #21
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    Hi Dwight, nice to meet you. Wow, another 30 year Weggie. Can you fill us in on the years between dx and the present? What has your health been like?

  2. #22
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    Dwight, aka Curly Girl

    Very nice to meet you. I am interested in your rheumatologist. Do you know how many Wegs patients he treated? Thanks

  3. #23
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    I'm a little tired right now - tomorrow I have my second infusion of Retuxan. I'm taking Furosemide, Plavix, Actonel, aspirin, Avapro, Isosorbide, Lipitor, Protonix, Zetia & Folic Acid. No Prednisone, Celcept, Cytoxan, Methotrexate or Bactrim right now! However, tomorrow during my infusion of Retuxan, I'll receive 1000 mg of Prednisone - lots of fun! Other than that, I hardly take anything!

  4. #24
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    I don't know how many WG patients Dr. Byrd has treated. Everytime I see him, I learn more about his qualifications. He worked in a large hospital on the east coast. I was very surprised he's treating 5-6 patients, just in our area. Here's an example of why I trust him: I've lost the sight in my left eye from a stroke. Six months ago, I had sudden blurred vision in my right eye. The hospital emergency staff brought in an eye specialist and others. They were baffled and had no answers. Dr. Byrd walked in and ordered massive doses of Prednisone to counteract the Wegener's inflamation, which saved my eyesight. Within the week, we started Retuxan. Actually, we had been requesting approval of Retuxan treatment from my insurance and they had rejected the request. After my hospital stay, Dr. Byrd sent ALL of my files (8 inches thick!) and asked the insurance specialist, "OK, you tell me what we're going to do!". The insurance company immediately approved the Retuxan. Dr. Byrd is willing to fight insurance companies, even fight them in court. Love that guy!

  5. #25
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    Sangye - well... it's been a journey. I've had many flareups over the years, 7 years of oral Cytoxan (causing 2 bladder cancers), too many years of Prednisone (now have osteoporosis), kidney involvement at 50-years-old, two strokes, two heart attacks, four stints "and a partridge in a pear tree". OK, so after so many years of health issues, I have a warped sense of humor

    Someone mentioned strokes and heart attacks with WG patients - we have a propensity to these conditions.

  6. #26
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    Oh man, Dwight, you've really been through the ringer, and you're so young, too. I have the same warped sense of humor but I had it before Wegs.

    Why are they giving you 1,000 mg pred for rtx infusions? My Wegs doc at JHU gives 100 mg solumedrol and said the lowest he'd go is 80mg.

  7. #27
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    Cool RepWhly

    I believe there's a conversion from the mg to another measurement that equates to 1000. So it's probably 100 mg which, in any measurement, keeps me awake for the next 3 nights! Which is good so I don't accidentally chew my arm off from hunger while I sleep!

  8. #28
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    LOL-- it's good to keep your arms. Otherwise you'd have to open public doors with your mouth and I hear the hand sanitizers taste bad.

  9. #29
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    Oh, man! That's a big eeeeyouuuu!

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