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Thread: Trying Something New

  1. #11
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    Hoping this helps! You deserve it!

  2. #12
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    good luck with the new treatment plan Sangye xx
    Diagnosed March 2001 ... WG Involvement - Ears . Sinus ( saddle nose) , eye ( blind Left )
    currently on 5 mg Pred , Myfortex 6x360mg/d , Fosamax 70mg .

  3. #13
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    Hi Sangye, I hope the new treatment plan works well for you!

  4. #14
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    Please keep us posted on your progress. Good vibes your way!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

  5. #15
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    Sangye...I hope this is the treatment recipe will work for you. Since RTX is so new for Weg's patient, I guess you are the guinea pig; for lack of a better word...as to how best apply RTX for Weg's patient.

    My doc seems to think that with some of his patients on RTX...he has noticed in the last year that the infusion last less and less. That is by no means a concrete measure for everyone, just his patients who are on RTX seems to need an additional infusion before the year.

    I had inquire about RTX...but since Cellcept has kept me in remission for the last 4 years he did not want to switch me to RTX.

  6. #16
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    I think if Cellcept is working for you then there's no reason to switch to rtx. Save rtx in case you need it someday.

  7. #17
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    He did mentioned that...plus I did not realized how expensive RTX is.

  8. #18
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    Very

    Honestly I'm almost to the point of wanting something other than RTX as it has cost me about 6000 out of pocket the last two infusion. Bad idea as I know it works well for me, but I really hope I stay in remission this time around.
    ~ Bob

  9. #19
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    Carrie - My experience with RTX the first time was the same as yours, life was so different after the first infusion, it was amazing.

    Now I am on my 3rd round of RTX and it is really wiping me out for a few days after the infusion. My doctor seems to want to stick with the 4 protocol and I want to try some of the others. If anyone finds links about trials/presentations/etc could you please post them in here so we can find them. I would love to see the ppt that was referenced above but I can't seem to find it online.

    Thanks!

  10. #20
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    Natural Bridge Station, VA; Grandy, NC (OBX); formerly Fredericksburg, VA
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    I've tried to upload the .ppt file from my computer, but don't think it worked. I'll keep trying!
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

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