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Type: Posts; User: PattyL

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    Re: First Cytoxan Infusion ...

    Hi Lily, Happy to hear you are off the Decadron . Sounds horrible! As for me I got the cytoxin everything seemed ok but then I got sick with shortness of breath very scary and I tested positive for...
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    Re: First Cytoxan Infusion ...

    Hi Lilly, Hope you are doing well and feeling better! I've never heard of Decadron, is that something new? Sounds like it worked fairly quickly. I have several more infusions the next one is Jan...
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    Re: First Cytoxan Infusion ...

    Hi Lilly, Yes its a wild ride! What meds are you on to manage your flare? I am also very hoarse and raspy I'm trying to believe its from my inhalers but who knows i've been having the feeling of a...
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    Re: First Cytoxan Infusion ...

    Hey that's GREAT! Glad to hear you went into remission! and maintaining. Good health and blessings to you.
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    Re: First Cytoxan Infusion ...

    Hi Lilly, Yes, actually I have had WG over 25 years I was diagnosed 25 yrs ago. So far the disease has concentrated in my sinuses,ears lots of ear infections and hearing loss, saddle nose my ent at...
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    Re: First Cytoxan Infusion ...

    Hi Donna, That is good to hear. I don't want to feel any sicker. My hair is already so thin from prednisone and maybe Imuran. Maybe it will take away all my grey that would be good. lol. Did it get...
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    Re: First Cytoxan Infusion ...

    Thank you. I previously had rituxin. That went well but I can not take that one again due to risk of JVC virus. Thank you for your time.

    Blessings,
    Patty
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    First Cytoxan Infusion ...

    Good morning, I am going to have my first Cytoxan infusion on Thursday..a little nervous but it has to be done. I will have them every 3 weeks as long as I can handle them ok. Can anyone tell me...
  9. Thread: Happy New Year!

    by PattyL
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    Re: Happy New Year!

    Happy New Year!!
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    Re: Methotrexate vs Imuran?

    Thank you. I'm going to try the folic acid. I have kidney involvement as well so I just hope the folic acid will be ok for me i'll check with dr. Did you have many side affects from the cytoxyn?
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    Re: Problems with breathing

    Pease get to the Dr. I just spent a week hospitalized not being able to breathe. Flare. not expected while on Imuran and predisone. don't wait.
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    Re: Southern California specialists?

    I'm getting treatment from docs. at UCSD rheumatology,nephrology,and pulmonary.
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    Re: Methotrexate vs Imuran?

    I'm going to start cytoxin infusions next week. My hair loss is already bad from the predisone or Imuran I don't know which. I'm really not looking forward to cytoxin
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    Re: Methotrexate vs Imuran?

    I have been on Imuran about 3 mos. with predisone . I don't believe Imuran is helping. I have no side affects from it so that is a plus. However I just had a big flare while taking Imuran and weaning...
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    Re: Wegeners and Kidneys

    Hi there,
    Hope you are feeling better. Yes , this is very common. I have lung and kidney involvement. diagnosed about 25 yrs ago. Just trying to recover now from a flare. I was hospitalized for...
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    That is awesome! Good for you Max! Have a...

    That is awesome! Good for you Max! Have a wonderful day.
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    Pred. the necessary evil can't wait to be off of...

    Pred. the necessary evil can't wait to be off of it. (hopefully) I am waiting for RTX to work it's magic which I hope will be soon. Thank you for the info. Everyone here is very helpful.

    Take...
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    Hi Pete. Thank you for the info. I'm on 15mg...

    Hi Pete.

    Thank you for the info. I'm on 15mg pred now doc says in about 3 wks we can taper to 10mg I have lung and kidney involvement so now on the lower dose I notice my breathing is not as good....
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    Seems a little long my Dr says 6-8 wks also. 2...

    Seems a little long my Dr says 6-8 wks also. 2 infusions 1 in July 1 in Aug. hope to see some results soon. Pred. taper is now at 15mg Hope your daughter is seeing/feeling some benefit soon.
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    This is great information! Thanks so much.

    This is great information! Thanks so much.
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    Hi, I am pretty sure this is caused from...

    Hi,

    I am pretty sure this is caused from prednisone I am experiencing the same things. I just had my last infususion of RTX I had the brain fog before the RTX I am now being tapered from prend....
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    Happy Birthday Anne! Cheers!

    Happy Birthday Anne! Cheers!
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    Yes our disease is awful I have pins and needles...

    Yes our disease is awful I have pins and needles in my feet and ankles/legs also hands. They first came as shooting pains. Muscle cramps stopped but now are coming back, I also have weakness and...
  24. Great story Thanks for posting.

    Great story Thanks for posting.
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    Prendisone side effects / Rituxen

    I have been on prendisone for 4 mos.Started 40mg now tapered to 20mg as I started rituxen just had my second infusion Dr may taper again on the Aug 20th visit to 15mg. Seems like I have just as many...
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