User Tag List

Likes Likes:  0
Page 3 of 3 FirstFirst 123
Results 21 to 24 of 24

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

  1. #21
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,956
    Post Thanks / Like
    Mentioned
    14 Post(s)
    Tagged
    0 Thread(s)

    Default

    Since I was 58 when dx'ed, I didn't have to worry about early menopause or not being able to get pregnant. I can certainly see why many would have an issue there. But we have heard of some who've gotten pregnant after CTX, and I hope you may be among those if that is what you'd choose, savedbygrace!
    Anne, dx'ed April 2011

  2. #22
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,171
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by savedbygrace View Post
    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).
    It has a short term record in treating Wegs so there is no data on, or about long term effects. This is one reasons, plus it is very expensive, that it is used only when medically necessary.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #23
    Join Date
    Mar 2014
    Location
    Decatur, Mi USA/Naples, FL
    Posts
    166
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by savedbygrace View Post
    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!)

    Savedbygrace

    I also had a bad reaction to Rituximab, however the nurses stopped it quickly. They stopped mine after 23 minutes as I was starting to itch in my throat/ears. The nurse pumped me full of Benedryl and ended well. I ended up changing to CC to Villa-Forte' and back on MTX and still on 2 mg pred. can't get off it. I am moving back into remission so will stay with the mtx.

    Mary

  4. #24
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    818
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    SavedbyGrace,

    I'm sorry that you had a bad reaction to RTX, I too have had bad reactions. The first reaction to RTX that I rec'd was on my Birthday in 2012 and I thought I was going to die. The reaction didn't happen during the infusion, it was hours afterward and I was in a hotel room. I woke up out of a dead sleep with coughing, throat closing off, high fever, short of breath and chills. I right away took Tylenol, Preds, Benadryl and used my inhaler, I had to do that 2 other times that night. I don't know why I didn't tell my husband to take me back to the hospital, just really stupid and stubborn of me. I called the clinic the next morning and they said the same thing, then ask me how I knew what to do. I guess somebody was watching after me from above. I have had six sets of RTX and have to have IV Benadryl, lots of Solmedrol and Tylenol, it also has to be ran really slowly. After each Tx I have to take Benadryl and Tylenol for at least 24 hrs now. It is very scary about the long term effects of RTX, but some have no other choice. Wishing all the best for a better Tx.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


Page 3 of 3 FirstFirst 123

Tags for this Thread

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •