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Thread: Rituxan side effects better or worse?

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    Default Rituxan side effects better or worse?

    I was recently diagnosed with a WG flare after many years (with thanks to those who urged me to get to the doctor without delay) and have been scheduled for Rituxan starting next week, once a week for four weeks. My initial treatment in about 1998 was daily Cytoxan pills for many months, which were pretty toxic and had their own side effects, but started making me feel well overall pretty quickly.

    When I read the posts about Rituxan here, it sounds like the side effects are somewhat like flu symptoms--fatigue, etc. However, those are the symptoms I am already having from WG. Does Rituxan make those symptoms worse, for those who have taken it? Does it give a subjective feeling of relief before long? Not sure that this question makes sense, and everyone is obviously different, but I'm trying to get a subjective sense from others as to whether it's going to make me feel worse, better, or just substitute some flu-like symptoms for the ones it is relieving!

    Also, were you able to drive yourself to the treatments and home? Not entirely sure how much independence I can expect compared to my usual very independent life!

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    Default Re: Rituxan side effects better or worse?

    Hi Cat P. (Btw, are you a cat person ? I am)
    After my first rtx IV years ago I was too tired to drive back home. In the last years I sleep during most of the IV and I can drive after it. But I suggest you to ask someone to drive you until you will know how it affects you.
    I dont have flu like symptoms after rtx. Only BIG fatigue during the week after. So try to take as much rest as you feel like. Just imagine the battle that will be going on inside your body, and let this miraculous medicine do its wonders.
    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.

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    Default Re: Rituxan side effects better or worse?

    @Cat P.

    I agree with Alysia about driving.

    My post-treatment symptoms include wakefulness the night following treatment followed by mild fatigue the day after. I get a big dose of steroids, some Tylenol, and some Benadryl with my rtx, so I believe the pre-treatment drugs have more to do with my symptoms than the rtx itself.
    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

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    Default Re: Rituxan side effects better or worse?

    Thanks Alysia and Pete; it is nice to get a sense of what to expect. Also good to work within the limits in terms of scheduling with work and time off.
    Alysia, yes, I'm a cat person! Nice to have them around when you're not feeling great, isn't it?

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    Default Re: Rituxan side effects better or worse?

    Quote Originally Posted by Cat P. View Post
    Thanks Alysia and Pete; it is nice to get a sense of what to expect. Also good to work within the limits in terms of scheduling with work and time off.
    Alysia, yes, I'm a cat person! Nice to have them around when you're not feeling great, isn't it?
    Cats are angels on earth.
    Did you know that rtx was first developed from chinese hamster ? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171018/

    I copy:
    "The first quantities of rituximab were generated by heterologous expression from a Chinese hamster ovary (CHO) cell in hollow fiber reactors".


    I say that that's why cats are following me everywhere I go...

    Good luck at your infusions.
    Last edited by Alysia; 02-17-2018 at 11:42 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.

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    Default Re: Rituxan side effects better or worse?

    Chinese hamsters? That must be why my doctor told me there were mice genes in the Rituxan. Luckily my cats are so well-fed and lazy that they would not chase a even the most small and enticing mouse, but I'll be on the lookout for any confusion.

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    Default Re: Rituxan side effects better or worse?

    Yesterday I had my first rituximab infusion. So far it has knocked me for a loop. I had severe chills all night, which I was not expecting...but should have expected if I had read the hospital's handout carefully! Has anyone else had that reaction?

    If you did have a reaction to rituximab, was your second or third round of infusion better in terms of side effects?

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    Default Re: Rituxan side effects better or worse?

    Quote Originally Posted by Cat P. View Post
    Yesterday I had my first rituximab infusion. So far it has knocked me for a loop. I had severe chills all night, which I was not expecting...but should have expected if I had read the hospital's handout carefully! Has anyone else had that reaction?

    If you did have a reaction to rituximab, was your second or third round of infusion better in terms of side effects?
    I didnt have chills at the night after rtx but sometimes I have nightsweats after. Not sure if it is a reaction to rtx or to the high steroids.
    I am on rtx since 2013 every 6 months. I dont remember exactly how it was in the first rounds, but over the years I feel easier with it. Less exhausted. Although it can also be because now I sleep during most of the IV, take a day off work the day after and rest during rtx month.
    Try to listen to your body. Dont push yourself. Rest as much as you need. Let this magical med do its' miracle.
    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.

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    Default Re: Rituxan side effects better or worse?

    Quote Originally Posted by Cat P. View Post
    Yesterday I had my first rituximab infusion. So far it has knocked me for a loop. I had severe chills all night, which I was not expecting...but should have expected if I had read the hospital's handout carefully! Has anyone else had that reaction?

    If you did have a reaction to rituximab, was your second or third round of infusion better in terms of side effects?
    I have only gone through this one time for one month, four times. My first two times I ached the next day. Due to the 100 mg of Prednisone I never slept on the night of infusions. The first two times that I ached, I visualized a good angel emoji in my blood killing the bad guys. Third time didn’t ache. Fourth time came home so charged I reorganized my entire closet. My nurse encouraged me to eat to keep the nutrition up. I brought knitting and kindle with me but ended up talking to the revolving door of RA patients, who came and went, while I was embedded in.
    I love the cat and mouse thing. Preparing for my next one month treatment. Praying it works.
    How many treatments if Rituxan before you see results? My daily dose of Prednisone has made me an insomniac. Have tried natural pills and teas. How do y’all sleep? I am just a transplant here in the south, but southern speak is y’all and Bless your heart.

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    Default Re: Rituxan side effects better or worse?

    My first infusion was last year. 4 times the first time then just one 6 months later. I think I did ok with the first ones, but I was sick from the Wegs so it was hard to tell. The next time several days later I just felt really wiped out. Went to work but after my 8 hrs I would go home and do nothing. Now I just had another infusion. This time was even worse. I again did well until about 5 days after. I could barely get out of bed. Lose of appetite. This lasted around 3 weeks. Starting to feel slightly better though.

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