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Thread: Hello my name is rudder and I have had GPA since 1991.

  1. #11
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    who is your Dr, I am finding so many use rituxun as a mantenance and wonder what part of the country they are doing this...

  2. #12
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    Welcome Rudder
    I can't say I know anything about Ritiuximab : but the wonderful people on this site will help & advise u
    Good luck xxx


    Sent from my iPad using Tapatalk

  3. #13
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    Quote Originally Posted by brew22 View Post
    who is your Dr, I am finding so many use rituxun as a mantenance and wonder what part of the country they are doing this...
    RTX is usually used for maintenance when the usual ones like MTX, AZA and cellcept have been tried and found ineffective. We don't know what the long terms effects of RTX are so most doctors try to hold off using it for maintenance drug until it is really needed, plus the higher cost for it.
    Knowledge is power! Wisdom is using it to make good decisions!

  4. #14
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    Quote Originally Posted by brew22 View Post
    who is your Dr, I am finding so many use rituxun as a mantenance and wonder what part of the country they are doing this...
    I wouldn't think there's any particular part of the country they are doing it in, though I could be wrong. I don't take RTX but I think there are a variety of treatment protocols used by different docs to either get the disease under control or as a maintenance, and sometimes it's used in combination with other immunosuppressants. I think I've heard it said that treating with RTX is more of an art than a science, although someone might have said that about treating WG in general. I know one person on the forum who is using it as maintenance along with methotrexate, and the usual prednisone, and his doc is in Seattle. If I understand his treatment correctly, that is.
    Anne, dx'ed April 2011

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    Hi Susie. My Doctor is Dr. Mark Pearson who is a Rheumatologist at the West Suburban Center for Arthritis in Brookfield, WI which is just West of Milwaukee, WI. He has been treating me since 1991 except when I lived in Seattle, WA for several years. He is an excellent Doctor.

    I hope this may be helpful for you.

    Michael

  6. #16
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    Default 1 Bad Experience on Rituximab (plus benedryll)

    Looks like I'm the only one but I had a bad experience with Rituximab. Sent my heart rate down in the teens, had to stop immediately after the first "push" infusion. Didn't get my heart rate back up for days. Young cavaleir nurses didn't know what they were doing (and didn't care), they did it at night in the pulmonary wing of a hospital. Not sure if it was the large concomitant dose of Benedryl that I reacted to but whatever it was... it was BAD!! My husband had to tell them to stop because in between telling myself to "stay awake!!" and sinking into a creepy slow-heart sleep I managed to tell him "I feel like I'm being put to sleep like a dog." He saved my life. The doctors were shocked that those nurses had allowed it to get that bad. I'm glad I have a strong man to advocate at my side. Otherwise I'd probably be gone!

    Sadly the only alternative for me was Cytoxan. It's not the outcome I wanted, especially since I'm 29 and Rituximab showed so much promise for Wegs.

    Whether it was Rituxam or Benedryll that made my heart do that... I couldn't tell you. No one knows. But I believe heart failure is one of the warnings on the label. They make you sign a waver that you understand the risks.

    (Also, I never had heart trouble before that. And thankfully it was temporary and we stopped it in time!)
    Last edited by savedbygrace; 05-16-2015 at 07:02 AM.

  7. #17
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    Quote Originally Posted by savedbygrace View Post
    Sadly the only alternative for me was Cytoxan. It's not the outcome I wanted, especially since I'm 29 and Rituximab showed so much promise for Wegs.
    I'm sorry that RTX didn't work for you, whether it was the Benedryl, or what, and thank goodness for your husband and his clear thinking. I hope Cytoxan was successful for you, as it was for me. I know it is the drug everyone loves to hate, but none of our drugs are that great for us, and I like the way CTX got in there and did the job with just pills and not having to go through the whole rigamarole of the approval, the infusions, etc. Of course, if someday I need to take RTX, I will, and I'll remember your experience. So, thanks for sharing.
    Anne, dx'ed April 2011

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    Default So true

    Annekat, you're so right!! I do love to hate it but I AM so thankful for Cytoxan. No infusions is def a perk. I was really devastated by menopause as a young wife... wanted a family, didn't want a change-of-life before 30! But miracles still happen so. Just taking one day at a time...

    I also don't want to scare anyone away from Rituximab either.

    But if it can encourage others to be aware, be prepared... I figure it's better to get all the facts/experiences out there to examine.

  9. #19
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    Oh yes, and Cytoxan has been successful with me.

    2003 6+ months CTX + lots of pred. Then four years of MTX + low dose pred.
    Then FIVE YEARS of remission!! No meds!!
    2013 6 months CTX + pred. Currently still on MTX, no pred.

    Cytoxan has given me ten years of good results (although the first time I got hemorrhagic cystitis, the second time I was older/wiser and drank LOOOOTS of water).

    I've never really shared any of this anywhere. I avoided support groups. But now it's like I'm finally realizing how helpful they can be.

    Thanks AnneKat for being such a fantastic contributor!!

  10. #20
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    Quote Originally Posted by annekat View Post
    none of our drugs are that great for us.
    Yeah, I also wonder if Rituximab has long-term issues that we don't know about yet. Like how long was it studied in humans? Are we the guinea pigs? (I hate to bring it up but I honestly wonder this).

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