User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 15

Thread: 1st Relapse

  1. #1
    Join Date
    Jul 2010
    Posts
    102
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default 1st Relapse

    Three years of being in remission and its happened. My 1st relapse. I'm so upset, mad, and scared. Dr. sent me for CT scan because my lungs were not feeling right. I have nodules back on my lungs. I'm currently on Imuran 75mg. Started Pred 60mg yesterday and waiting to hear back again from Cleveland tomorrow but looks like I will start Rituximab this week. I'm really nervous about taking this drug, of course after reading the adverse reaction labels. When I was originally diagnosed I to Cyc and Pred. I tolerated both really well and achieved remission within 3months. I know many people on here have taken Rituximab before, if you could please let me know what to expect, side effects, etc... I would really appreciate it.
    Thanks

  2. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,294
    Post Thanks / Like
    Mentioned
    17 Post(s)
    Tagged
    0 Thread(s)

    Default

    I just finished two rituximab infusions 10 days ago. The only side effect I had was mild fatigue for about 36 hours immediately following them. I did my normal activities though.

    When you get your infusions, you will also be given a steroid (I had solu medrol), ibuprofen, and perhaps Benadryl about 30 minutes before they start the rituximab. When they start the rituximab, they will start very slowly to see how well you tolerate it. If all goes well, they will gradually increase the flow. My first infusion took about 4.5 hours. Second one took just over 3 hours.

    My first labs post infusions (1 week after) didn't show much change. I'm told it takes several weeks at least before the drug really starts doing its job.

    Good luck!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  3. #3
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,139
    Post Thanks / Like
    Mentioned
    35 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi
    I am sorry for you I hope you can soon go back to your remission.
    I had already 2 rounds of RTX. during it the only reaction I had was lowering of my blood pressure (as low as 35/70). I drank a lot and slept most of the time. each 30 min my bp was checked.
    after that I had fatigue for a period of time.
    from my experience, rtx is easy to get. and it is very helping. good luck !
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #4
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm sorry to hear you're flaring. I have had 2 rounds of Rituxan and both times the only side effect I experienced was fatigue. I got my infusions and just slept for 2 days after them. After that I would feel okay and would resume my regular schedule. I also had nausea and chills during the infusions (zofran and warm blankets helped), but that was only during the infusions. Bring a book or something to do since they are a few hours... I hope the infusions go well for you.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  5. #5
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,799
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default

    I just experienced my first relapse in Sept. Lots of familiar feelings, both physical and emotional. I was able to get out of it by going back on small dose of pred...good enough for me at this time. So rtx or ctx aren't necessarily the next step after a flare, altho my docs have threatened me numerous times (I take it as a threat, LOL!) that my next drug will be rtx...OK, so I'm in the 80% who flare within 2 or so years after dx and drugs...I really wanted that 20%, but it was not to be...so off on a new round of drugs...it's our future for most of us. Way it is! Best of luck now!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  6. #6
    Join Date
    Nov 2013
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi there, can you please tell me how to make a new post, the only thing I have figured out how to do is to reply to a post! I was diagnosed with WG in August after spending 5 and then 10 days in the hospital. My lungs were the problem, but I had been having trouble with my ears for months before that. I had 4 infusions of Rituximab, once a week, and did not have any noticeable side effects. Also tapering of pred., currently taking 30 mg, going to 20 this week. My oncologist has scheduled me for a Rit. infusion every 2 months, I guess until my numbers get better? My anca number was 130, down from somewhere above 150.

  7. #7
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    19 Post(s)
    Tagged
    0 Thread(s)

    Default

    Sectech, a RTX infusion every 2 months is not normal. Every 6 months can be used as maintenance but you are a new Weggie so using RTX even like this so soon is not normal. It is better to try the other drugs like Imuran or Methotrexate and save the RTX, the big gun, for when you really need it.
    Phil Berggren, dx 2003

  8. #8
    Join Date
    Jul 2010
    Posts
    102
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks everyone for all you information and support! I think I'm still in shock that this is happening again! But ready to fight, again! Hopefully going for my 1st treatment Friday.

  9. #9
    Join Date
    Jul 2010
    Posts
    102
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    On the main page you will see the topics, like click on medication, then you will see a spot that says Start a Thread (I Think) click on that.

  10. #10
    Join Date
    Jul 2010
    Posts
    102
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Sorry says +Post New Thread

Page 1 of 2 12 LastLast

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
  •