User Tag List

Likes Likes:  12
Page 1 of 2 12 LastLast
Results 1 to 10 of 16

Thread: First Cytoxan Infusion ...

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    May 2015
    Posts
    55
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    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

  2. Likes Lilly liked this post
  3. #2
    Join Date
    Oct 2017
    Posts
    159
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    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! It’s 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. I’m 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. It’s 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

  4. Likes Alysia liked this post
  5. #3
    Join Date
    Oct 2017
    Posts
    159
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default Re: First Cytoxan Infusion ...

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


    Sent from my iPhone using Tapatalk

  6. #4
    Join Date
    May 2015
    Posts
    55
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    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

  7. #5
    Join Date
    Dec 2013
    Location
    Mobile, Alabama
    Posts
    256
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    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

  8. Likes Alysia liked this post
  9. #6
    Join Date
    May 2015
    Posts
    55
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    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

  10. Likes Alysia, Lilly liked this post
  11. #7
    Join Date
    Dec 2013
    Location
    Mobile, Alabama
    Posts
    256
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: First Cytoxan Infusion ...

    Hi Patty, Thank you for sharing....I find our beginnings with Wegeners very similar....I was diagnosed in 1990, I was 25yrs old and had been sick with ear, eye, sinus infections for a year, then landed in the hospital and diagnosed within a week. My beginning meds were prednisone, oral Cytoxan and eventually Bactrim. The oral Cytoxan did make a lot of my hair fall out, but it came back in eventually and it also affected my ovaries, so I chose to get my tubes tied. My wegeners simmered, I always had to stay on a small dose of prednisone to keep it away, and I was VERY physically active, pushing through each flare, all the pain, but I did take the meds when I flared. So the disease has changed SO much over time!! Things that would clue me into knowing I was having a flare changed, so I depend more on lab results now for inflammation. Also, I just finished up a flare, and now am left with trying to decide what to work on next, my ears? My lungs? Both are in desperate need of study....and also now, I am staying very hoarse and raspy...so maybe the beginning of the return of my throat problems. Its just a crazy ride. I totally admire you for actually choosing to get off meds that were making you feel bad and sick, and deal with this monster of uncertainty!! I have also wondered if my kidneys will ever get worse. I don't dwell on it, but I try to stay focused enough on my body so I can tell if I need to contact a doctor about something serious. Anyway, at this point, like I said, I am dealing with the damage the disease has caused, mostly my sinuses. I am researching info about what is going on with my ears. I feel they may be permanently damaged, as my eyes tear ducts are. But now that my lungs are acting up, its worrisome become I battled MRSA 2 years ago, and it was tough. But all the ct scans of my lungs are a mystery to my doctors, so we shall see. Just living day by day, some days are fantastic....some not so much. But I am here, alive, and happy. I hope all goes well with your infusions, and will be thinking and praying for you....Blessings
    Life is a Gift~ Lilly

  12. Likes drz, Alysia liked this post
  13. #8
    Join Date
    May 2015
    Posts
    55
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: First Cytoxan Infusion ...

    Hi Lilly, Yes its a wild ride! What meds are you on to manage your flare? I am also very hoarse and raspy I'm trying to believe its from my inhalers but who knows i've been having the feeling of a lump in my throat as well. Just hoping it isn't something new. Still very tired from infusion, no nausea so that's good. It's been 5 days I was hoping not to be so tired. I do have a lot of fatigue from the disease. Take care. Blessings and good health to you!

  14. Likes Lilly liked this post
  15. #9
    Join Date
    Dec 2013
    Location
    Mobile, Alabama
    Posts
    256
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Smile Re: First Cytoxan Infusion ...

    Hi Patty, Well, this particular flare (as I look back at my calendar) actually began in November....I didn't realize it was a flare because it was just in my chest...so my lung doctor treated me with antibiotics. Then I went to my Rheumy in late November, and all my labs were elevated, and he felt I was flaring....so he put me on Decadron...I had never taken it, but it seemed to work pretty quickly. Now, after the last set of labs, my inflammation is down to normal, so my Rheumy has taken me off Decadron and back on prednisone 10mg. (I usually stay on that all the time, because if I stop taking it, I will flare) I am so sorry you are having to deal with the side effects of the Cytoxan infusion. I know the "kind" of tired you are having...and its not just sleepy, its a whole body tired, and you need to be able to rest. I am also dealing with the fatigue of the disease....I don't think that ever goes away...I think its just easier some days than others. Are you going to have another Cytoxan Infusion? Ill be checking in here, and Ill be praying for you. Blessings and Love....
    Last edited by Lilly; 01-11-2018 at 12:08 AM.
    Life is a Gift~ Lilly

  16. Likes Alysia liked this post
  17. #10
    Join Date
    Apr 2014
    Posts
    32
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    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

Page 1 of 2 12 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
  •