User Tag List

Likes Likes:  27
Results 1 to 9 of 9

Thread: Rituxan is my new friend

  1. #1
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,764
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Rituxan is my new friend

    For those who knew, I had a collision this last summer which resulted in severe bursitis...which then transformed into a flare. First flare 8 years ago was sinuses & lungs, this one affected most of my joints & legs...weird, but couldn't walk. After a double dose of pred, and a dx based on bloods getting high again, Mayo & I decided to go to Rituxan. First injection lasted about 3 days then relapse, 2nd injection seems to be improving things this time around. 2 infusions in 2 weeks...now wait & see. Anyways, now a part of the Rituxan group!!! Hope all is well with all!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  2. Likes Masha, John S, Alysia, annekat, mishb liked this post
  3. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,154
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituxan is my new friend

    Hey Don,

    Welcome to the club!! ���� Hope it works well for you!! Sorry to hear about the collision.
    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

  4. Likes Dirty Don, John S, Alysia, Masha liked this post
  5. #3
    Join Date
    Mar 2017
    Posts
    157
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituxan is my new friend

    Welcome to the Rituxin fan club. I'm due for an infusion this coming Tuesday at Cleveland Clinic. Dr. VillaForte told me that I'll only need one infusion this round. Rituxin has turned my life around. I feel so much better than I did 2 years ago, it's like night and day.

  6. Likes Alysia, Dirty Don, Masha, RiverJoy liked this post
  7. #4
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituxan is my new friend

    Dear Don,

    Sorry for the flare but glad you got the best treatment possible. Welcome to the R club

    Not sure I understood from your post, what happened 3 days after the first infusion ? (When you write injection you mean infusion ? Pardon my English)

    It might take some time for rtx to work although for each one the timings might be different.

    If I remember correctly, you were already OFF all wg meds ? For how long before the flare ? Do you think that being ON wg meds could have prevent the flare ?

    Please update us how are you doing so far.

    Sending you prayers and much love
    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.

  8. Likes Masha, Dirty Don, annekat liked this post
  9. #5
    Join Date
    Mar 2017
    Posts
    157
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituxan is my new friend

    Quote Originally Posted by Dirty Don View Post
    For those who knew, I had a collision this last summer which resulted in severe bursitis...which then transformed into a flare. First flare 8 years ago was sinuses & lungs, this one affected most of my joints & legs...weird, but couldn't walk. After a double dose of pred, and a dx based on bloods getting high again, Mayo & I decided to go to Rituxan. First injection lasted about 3 days then relapse, 2nd injection seems to be improving things this time around. 2 infusions in 2 weeks...now wait & see. Anyways, now a part of the Rituxan group!!! Hope all is well with all!
    I think the immediate improvements that you are feeling are actually the other medications they are giving you at the time of infusion. Rituxin takes about a couple of weeks to get to work in my system.

  10. Likes Dirty Don, Alysia, annekat liked this post
  11. #6
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituxan is my new friend

    Quote Originally Posted by John S View Post
    I think the immediate improvements that you are feeling are actually the other medications they are giving you at the time of infusion. Rituxin takes about a couple of weeks to get to work in my system.
    Ok, I now understand. Don, when we get the rtx they give us before it 100 or 120 mg steroids (pred) in IV. So for 3 days you felt better because of it. You know the pred stuff, it works for the joints like oil to the tin man.
    After 3 days it was gone but rtx isnt working yet. It will.
    Hang in there. You will be back to your golf soon enough.
    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.

  12. Likes annekat, Keith, mishb liked this post
  13. #7
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,912
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituxan is my new friend

    Hi, Don, thanks for the update. I've wondered now and then. I guess you were doing well before the collision, interesting that the bursitis resulting from that would cause a flare. Well, I'm not on RTX yet, still hanging in with MTX, preceded by CTX. I'm doing ok, just bothered by double vision and occasional vertigo. I don't think RTX will fix those, but I've read so much from people on it that I have a feeling for how it goes. Not the same for everyone, but some predictability, takes awhile to work, etc. I hope it works wonders for you in the long run, and that you don't have to take it umpteen times, or indefinitely, as many people seem to need. Here's hoping you'll soon get back to your pre-collision state of health and that you will keep us informed. Happy golfing!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  14. Likes Dirty Don, Alysia liked this post
  15. #8
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,704
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituxan is my new friend

    Oh my dear DD, I'm so sorry that you have to go through this again, after being reasonably well.

    I am not in the RTX club, but I certainly get the non joys of bursitis.
    Cortisone injections have been a good fix for me.

    I hope that the accident/collision, didn't put your health back too far, and I also hope that the RTX can get you back up and about on the golf course, once again.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  16. Likes Dirty Don, Alysia, Jaha liked this post
  17. #9
    Join Date
    Dec 2013
    Location
    india
    Posts
    39
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Rituxan is my new friend

    Help
    Hi guys im Neha from India. Im a wegeners pt last 13 years. Recently had a flare in throat. Unable to speak eat n drink fr last 20 days due to severe ulcers n severe pain. Got hospital n spent 2 lakhs of my savings on bills. Dr suggest rituximab which costs 35000/- fr 500mg. Im not in a state to afford it and looking for smaller of monetary help....its a matter of my life and death...im with no job... Plz help

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
  •