User Tag List

Likes Likes:  110
Page 2 of 5 FirstFirst 1234 ... LastLast
Results 11 to 20 of 45

Thread: First rituximab infusion

  1. #11
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I had my second infusion of rituxan last week. No hair loss. After the first one it took a couple of weeks to start to feel better. I am on prednisone 30, cellcept 1500mg and cyclosporine. I started on prednisone 40 mg the beginning of June. Hoping you have a quick recovery!

  2. Likes Alysia, LisaT, Jaha liked this post
  3. #12
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    How long does the extra fatigue last? I'm still so wiped out I can't do much of anything but sleep. I'm trying to just rest because my body demands it but my mind wants to get moving so I'm just wondering when others started to get a bit of energy back after the infusion. 😊
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  4. Likes Alysia liked this post
  5. #13
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Glad you're starting to feel better! What have they told you about when andbhow quickly you should start weaning off the prednisone? I'm only on 10 mg but would like to cut it down as soon as I feel well enough.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  6. Likes Alysia liked this post
  7. #14
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    How long do you stay so tired for? It's three days after and I'm still really wiped. Can't do much. But I'll just rest until I feel up to doing some more.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  8. Likes Alysia liked this post
  9. #15
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    I think a lot of the fatigue comes from crashing off the big dose of steroids and Benadryl. I'm usually a little tired for 24-48 hours after infusion. I find that a bit of light exercise helps.
    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

  10. Likes drz, LisaT, Alysia, Jaha liked this post
  11. #16
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I think the high dose of prednisone is keeping me energized, so I'm not that fatigue. Plus all the other immunosuppressive drugs I'm taking is knocking the wegners down. I say I am feeling about 75%. Hope you feel better soon.

  12. Likes Alysia, LisaT liked this post
  13. #17
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    That makes sense because I've also had weird soreness and pins different from my usual. They had to give me second doses of both pred and benadryl when my ears and throats started itching and feeling full. If only prednisone wasn't as bad for us as it is good! We could just stay on mega doses and feel good.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  14. Likes Alysia, Jaha liked this post
  15. #18
    Join Date
    Apr 2009
    Location
    South Carolina
    Posts
    4,273
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I think there is hesitancy from my rheumatologist reducing my prednisone too fast. I had sinus, eye and lung involved in my last flare. Then ended up with sinus surgery in July. Total sinus surgeries:5! I was out of work for two months from coughing and sinus pressure and headaches. Still have upper right back tooth ache. Tuesday will be two weeks post rituxan infusion. Hoping it will kick in ASAP .
    Hoping soon I can slowly get off prednisone.
    I have not exercised in 3 1/2 months. Thinking about walking a mile today.

  16. Likes Alysia, LisaT, Jaha liked this post
  17. #19
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by elephant View Post
    I think there is hesitancy from my rheumatologist reducing my prednisone too fast. I had sinus, eye and lung involved in my last flare. Then ended up with sinus surgery in July. Total sinus surgeries:5! I was out of work for two months from coughing and sinus pressure and headaches. Still have upper right back tooth ache. Tuesday will be two weeks post rituxan infusion. Hoping it will kick in ASAP .
    Hoping soon I can slowly get off prednisone.
    I have not exercised in 3 1/2 months. Thinking about walking a mile today.
    It may take several weeks for rituximab to take full effect. That said, you should gradually feel better.

    Go for a walk today, but don't overdo it. If you feel up to it, try again tomorrow. Just listen to what your body tells you.
    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

  18. Likes elephant, LisaT, Jaha liked this post
  19. #20
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Dear Lisa, each one is different. For me it takes about a week to be less tired, and about a month not to feel the weired feeling in the body, something I cant describe exactly, kind of a feeling similar to being after car accident. About a month after rtx my bloods start to look better (if I flare) and 2 months later I am as good as new.

    Dr. Phil was not too tired after rtx, not even at the same day that he got it. But he is The Batman.

    elephant, is this your first rtx IV ? I remember reading many of your posts on old threads.

    How are you both feeling today, ladies ?

    Sending prayers ❤❤
    Last edited by Alysia; 09-10-2017 at 10:46 PM.
    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.

  20. Likes LisaT, Jaha liked this post
Page 2 of 5 FirstFirst 1234 ... 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
  •