User Tag List

Likes Likes:  0
Page 1 of 3 123 LastLast
Results 1 to 10 of 29

Thread: My latest Rtx treatment

  1. #1
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    819
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default My latest Rtx treatment

    I had a RTX tx on Monday at CC and had another reaction about 1 1/2hrs into the infusion. They did all the right protocol, Benadryl, Tylenol and 125 mgs of sol Medrol, before starting the drip, but I still had a reaction. This was my was my 6th time to have RTX and have reactions on some of them. It started that my throat and chest got tight and then I had trouble breathing. They then shut the drip off and called in the doc to check me out, she wanted to know if I wanted to stop the infusion, and I said no lets go for it. She ordered them to give me 100mg more Sol Medrol and IV Benadryl, wait for 20mins and then start the drip up slower. I finally got thru it after 7 1/2 hrs. They told me to take Tylenol and Benadryl every 4hrs for 24hrs, which is working well, I'm just really exhausted. I have been trying to figure out why I have trouble sometimes and the only thing I can figure is that they have had me on larger doses of Preds before. Just wondering if anyone has had reactions sometimes but not always?
    Jana


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


  2. #2
    Join Date
    Jul 2014
    Posts
    895
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Jana,
    I don't know if using rtx many times can cause a reaction, but I think someone else mentioned that they only did 2 half doses or maybe it was 1 infusion every so many months instead of all 4 infusions to keep the side effects down.
    Not sure if it was drz or not.
    When my mom got her infusion, they used dexamethasone and not salu mederol.

  3. #3
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Jana,how scary,I think I would of had them stop. All that benedryl you are taking now is probably making you sleepy on top of the RTX. I have only had 1 infusion and I had flu like symtoms for about a week. My dr. at CC won't let me have any more. But I think it was just a fluke for me. But I hope it does the trick for you and you start to feel better.At least with this weather,its a good time to sleep !
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #4
    Join Date
    Jul 2014
    Posts
    895
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Not sure if this will help those with rtx issues or not but keeping vitamin D levels up can possibly help rtx efficacy.
    Vitamin D Deficiency Impairs Rituximab-Mediated Cellular Cytotoxicity and Outcome of Patients With Diffuse Large B-Cell Lymphoma Treated With but Not Without Rituximab

    My mom had no problems with the infusions and I keep her D levels within the optimum range of 60-80 ng/mL, but this doesn't mean she might not have issues if she takes it again. It is just info. Vitamin D is our immune modulating hormone and hormones effect the entire body.

  5. #5
    Join Date
    Nov 2011
    Location
    Natural Bridge Station, VA; Grandy, NC (OBX); formerly Fredericksburg, VA
    Posts
    367
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Jaha View Post
    I had a RTX tx on Monday at CC and had another reaction about 1 1/2hrs into the infusion. They did all the right protocol, Benadryl, Tylenol and 125 mgs of sol Medrol, before starting the drip, but I still had a reaction. This was my was my 6th time to have RTX and have reactions on some of them. It started that my throat and chest got tight and then I had trouble breathing. They then shut the drip off and called in the doc to check me out, she wanted to know if I wanted to stop the infusion, and I said no lets go for it. She ordered them to give me 100mg more Sol Medrol and IV Benadryl, wait for 20mins and then start the drip up slower. I finally got thru it after 7 1/2 hrs. They told me to take Tylenol and Benadryl every 4hrs for 24hrs, which is working well, I'm just really exhausted. I have been trying to figure out why I have trouble sometimes and the only thing I can figure is that they have had me on larger doses of Preds before. Just wondering if anyone has had reactions sometimes but not always?
    I was fortunate with all of my Rtx infusions -- sorry this hasn't been the case for you. I remember the staff monitoring the speed at which I was infused. Slowly, slowly, slowly! My fastest infusion was about 4.75 hrs. They are so careful! Hope to hear good news of your recovery!
    KB -- "The good life is inspired by love and guided by knowledge". Bertrand Russell

    Dx in September, 2011. Major involvement: kidneys and lungs. Medical implications: fungal pneumonia, drug-induced hepatitis, allergy to fungal meds, ear infections, sinusitis, gall bladder removal, vitreal detachment, and eye cellulitis. Medial meniscus removal (unrelated to WG). Medications: Rtx, Pred 5.0, Lisinopril, Chlorthalidone, Levothyroxin, Omeprazole.

  6. #6
    Join Date
    Jul 2010
    Location
    Blacklick, Oh
    Posts
    1,399
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    I have had similar but less drastic reactions on my first infusion of the two. Though my last infusion (early this year) it didn't happen.
    ~ Bob

  7. #7
    Join Date
    Jul 2014
    Posts
    895
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Jana,
    I found the person that explained a protocol that works for them using rtx and it is Sangye and not drz.
    http://www.wegeners-granulomatosis.c...html#post89747

  8. #8
    Join Date
    Oct 2010
    Location
    Ohio
    Posts
    819
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks to all for your caring words. I'm slowly coming out of my exhaustion state and can at least stay awake to watch a whole movie. Mrtmeo, I'm taking Vit D daily but maybe not quite enough, thanks for the link I bookmarked so I could read it when I'm a little more with it. I did go to Sangye comment and read about the protocol they did for her, very interesting. I too had a lot of lung damage, plus have COPD. I going to talk with my doc about why I have had a reaction almost every time and maybe tell her about the protocol they did with Sangye.
    Jana


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


  9. #9
    Join Date
    Sep 2013
    Location
    England
    Posts
    829
    Post Thanks / Like
    Mentioned
    38 Post(s)
    Tagged
    0 Thread(s)

    Default

    Sorry I can't be of any help re RTX, but I'm always interested in people's reports on how it went for them (sorry it wasn't to good for you Jana). It helps me to prepare in case I need it in the future.
    Diagnosed April 1995

  10. #10
    Join Date
    Jul 2014
    Posts
    895
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Jaha View Post
    Thanks to all for your caring words. I'm slowly coming out of my exhaustion state and can at least stay awake to watch a whole movie. Mrtmeo, I'm taking Vit D daily but maybe not quite enough, thanks for the link I bookmarked so I could read it when I'm a little more with it. I did go to Sangye comment and read about the protocol they did for her, very interesting. I too had a lot of lung damage, plus have COPD. I going to talk with my doc about why I have had a reaction almost every time and maybe tell her about the protocol they did with Sangye.
    Jana,
    If u can, ask your dr to do a 25 hydroxy D test to tell you where your vitamin D levels are at and this will tell you if you need to take more or not.
    The optimum range, according to Dr Stasha Gominak's research is 60-80 ng/mL.

Page 1 of 3 123 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
  •