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Thread: First Cytoxan Infusion ...

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    Default First Cytoxan Infusion ...

    Good morning, I am going to have my first Cytoxan infusion on Thursday..a little nervous but it has to be done. I will have them every 3 weeks as long as I can handle them ok. Can anyone tell me what I might experience? How you may feel the next day etc. I appreciate your sharing.

    Blessings,
    Patty

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    Default Re: First Cytoxan Infusion ...

    I was super nervous too my first time. When you read about the side effects you expect to walk out of the infusion center dead! Itís not bad. You go in, the infusion center will give you Tylenol and Benadryl. Start an IV on you. Give you solu medrol through the IV. Iím not sure how you handle Benadryl but it makes me a drooling mess. They start you off really slow. Every half hour (your first infusion will be the longest) they will come in take vitals & increase the dose. My infusion center 200 mg an hour is the max infusion rate. But you always start very slow & it increases through out the time. Itís actually a nice break to sit & do nothing. I usually sleep. The side effects I have experienced is a head ache, nausea and sometimes I get diarrhoea for a few days but my stomach is also messed up. I have never had an allergic reaction, or flushing. If you have anymore questions I will be happy to answer. I have only been on it for a little more than a year though.


    Sent from my iPhone using Tapatalk

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    Default Re: First Cytoxan Infusion ...

    Iím sorry Patty-I glances at your post & thought it said rituxin infusion. Forget everything I have said!!


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    Default Re: First Cytoxan Infusion ...

    Hi Patty, I see you are going to have your first Cytoxan infusion. Then I noticed you mentioned in another post that you have had Wegeners for 25yrs? What were you given when you were first diagnosed? I have had Wegeners since 1990, and I have "limited wegeners". My disease is concentrated in my sinuses, eyes, ears, throat, and lungs. My kidneys are not involved in any serious way so far. I do get red blood cells in my urine when I have a flare, I suppose its the inflammation that causes this, so my Doctor does use the red blood cells in my urine as a marker to help him know I am having a flare. So, anyway, I'm interested to know what has brought you to the point of having a Cytoxan infusion....I mean I see WHY you cant have the Rituxan, but I would be interested in how your body has handled the disease, and if you have a lot of damage from it. But only if you feel comfortable sharing. Blessings,
    Life is a Gift~ Lilly

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    Default Re: First Cytoxan Infusion ...

    Hi Patty I had Cytoxan infusions and the only thing I noticed was that I was a little tired on that day and the day after. They give you an injection for nausea so you don't feel sick, they also gave me some anti sickness pills to take home but I didn't need them. I was a bit worried about hair loss but I didn't loose any hair my hairdresser commented that all of my grey hair had disappeared so that was a bonus. I can honestly say that I had no problem with them and wouldn't hesitate to have them again. Good luck I hope it all goes well.

    Donna

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    Default Re: First Cytoxan Infusion ...

    Thank you. I previously had rituxin. That went well but I can not take that one again due to risk of JVC virus. Thank you for your time.

    Blessings,
    Patty

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    Default Re: First Cytoxan Infusion ...

    Hi Donna, That is good to hear. I don't want to feel any sicker. My hair is already so thin from prednisone and maybe Imuran. Maybe it will take away all my grey that would be good. lol. Did it get you into remission? Thank you for sharing.

    Blessings,
    Patty

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    Default Re: First Cytoxan Infusion ...

    Hi Lilly, Yes, actually I have had WG over 25 years I was diagnosed 25 yrs ago. So far the disease has concentrated in my sinuses,ears lots of ear infections and hearing loss, saddle nose my ent at that time diagnosed me.,lungs,and kidneys. My kidneys and lungs are at the lowest point during this flare. When I was first diagnosed I was given high doses of prednisone, methotrexate, and Bactrim. I was hospitalized for pneumonia and wg flare. I continued with those drugs but...took myself off them because I did not like how they made me feel. Then I believe they started me on Cytoxan orally with prednisone I could not handle the Cytoxan orally made me sick..so again i took my self off it. I did contintue to feel the wg flares and was treated with prednisone. Went into remission. I did ok up until about 4 years ago then I had a flare my lungs had nodules and my kidneys were affected. So it was back on high dose prednisone and then most recently rituxin. I was off rituxin and weaned off prednisone I was doing ok. Next flare was in the lungs again so I was put on Imuran and prednisone. During that time I had a big flare lungs and kidneys, ended up back in the hospital. So my Dr is starting me on Cytoxan infusions first one tomorrow. I'm also taking Imuran and prednisone. I'm hoping the Cytoxan infusions will get me into remission I will get the infusions every 3 weeks to start. I have also been to see the kidney transplant drs. long process. The disease has damaged vital organs with each flare i think the damage is more. Sorry for rambling...Blessings, Patty

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    Default Re: First Cytoxan Infusion ...

    Quote Originally Posted by PattyL View Post
    Hi Donna, That is good to hear. I don't want to feel any sicker. My hair is already so thin from prednisone and maybe Imuran. Maybe it will take away all my grey that would be good. lol. Did it get you into remission? Thank you for sharing.

    Blessings,
    Patty
    Yes I did go into remission and I am now on cellcept and have been for four years.

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    Default Re: First Cytoxan Infusion ...

    Hey that's GREAT! Glad to hear you went into remission! and maintaining. Good health and blessings to you.

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