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Thread: Way Sick

  1. #101
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    It's not building fast--just gradually getting worse. I'm assuming my labs still look pretty good or Dr Seo would have let me know. Symptom-wise, I'm in that window where my docs (including Dr Seo) have not listened in the past when I say I'm not doing well. When we wait until my labs look bad it's too late and I wind up in the hospital. I can tell that level of bad is about a month or two away, which is why I'd rather re-treat before that starts. He also said he wants to wait to re-treat until I can't stand the symptoms so we can delay using rtx as long as possible.

    I think I'm okay. This is following the exact same pattern it always has. Of course I could be wrong about that and this could be the last post you ever receive fro.........

    (Just kidding )

  2. #102
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    Quote Originally Posted by Sangye View Post
    It's not building fast--just gradually getting worse. I'm assuming my labs still look pretty good or Dr Seo would have let me know. Symptom-wise, I'm in that window where my docs (including Dr Seo) have not listened in the past when I say I'm not doing well. When we wait until my labs look bad it's too late and I wind up in the hospital. I can tell that level of bad is about a month or two away, which is why I'd rather re-treat before that starts. He also said he wants to wait to re-treat until I can't stand the symptoms so we can delay using rtx as long as possible.

    I think I'm okay. This is following the exact same pattern it always has. Of course I could be wrong about that and this could be the last post you ever receive fro.........

    (Just kidding )

    How many Rituxan treatments have you had for Wegener's disease? Are they concerned about the impact of Rituxan on your body so they want to stretch them out as much as possible. I know people who have had a dozen or more treatments complain about various side effects from it. I only had a couple sessions and don't remember what impact it had on me.
    Last edited by drz; 01-16-2011 at 02:48 PM.

  3. #103
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    I've had two rounds of 4 infusions each and we plan to do a 2-infusion round next time since it seems to work just as well.

    Dr Seo is delaying treatment for two reasons
    1) No other option (I can't use ctx again because it's toxic to my bone marrow) and
    2) Too many unknowns about the long-term side effects since I'm "only" 47.

  4. #104
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    I emailed Dr Seo this morning but forgot that it's a holiday (Martin Luther King Jr's birthday for non-Americans). I'm at the point where just sitting to meditate I have so much pain I can hardly focus.

  5. #105
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    DEE x

  6. #106
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    Oh Sangye, I wish I could take your pain away. I sure hope you are not flaring but as you said it sure points to it. I hope Dr. Seo gets back to you soon. When is your next appt. with him?

  7. #107
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    Thanks guys. I don't see him until March. I don't need to see him right now since I can describe what's going on. He might want a chest x-ray or CT to make sure I don't have a lung infection before doing rtx. I'd be okay with that.

  8. #108
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    Just got an email back from Dr Seo's receptionist saying he agrees with restarting rtx. What a relief! (well, you know--sort of)

  9. #109
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    It may not be ideal, but it sounds like this is what is needed. Hope things look up soon.
    Jack

  10. #110
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    Yeah, it's definitely needed. I've noticed lately I'm looking for another reason (besides Wegs) for this pain or that symptom. Like my wrist will start hurting and I think "Well, I did carry that heavy grocery bag....." Or I'm stiff all over and think "Maybe I need more fish oil." I noticed this in my daily log and know from past experience that it means the Wegs dog is barking.

    It's not denial, since I felt the Wegs waking up. It's more like doubting myself because the symptoms are subjective and vague. Wegs is crazy-making.

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