First Cytoxan Infusion ...

[PattyL]

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

[NatriceRomeo]

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

[NatriceRomeo]

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

[Lilly]

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,

[Donnak06]

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

[PattyL]

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

[PattyL]

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

[PattyL]

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

[Donnak06]

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.

[PattyL]

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

[Lilly]

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

[PattyL]

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!

[Lilly]

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....

[PattyL]

Hi Lilly, Hope you are doing well and feeling better! I've never heard of Decadron, is that something new? Sounds like it worked fairly quickly. I have several more infusions the next one is Jan 27th. Yes, some days are better than others we just have to try to push through them sometimes its hard i know to find the energy. Prayers and Blessings to you.

[Lilly]

Hi PattyL, Well, I had never heard of Decadron either!! When my Rheumy put me on it, at my Nov. 29th appointment, I believe it may have been because we were going into the holidays, and he could tell I was probably flaring, but he wanted to see my labs he took at that appointment before he scheduled a Rituxan infusion. So, he said the Decadron was like prednisone on steroids....it worked fast, so I started it. Then I received a call from him on Dec. 11, and he said that according to my Nov. 29 lab results I was definitely flaring. I was feeling better since being on the Decadron, so he left me on the Decadron, and I was really happy with it at this time. At my next appointment, Dec. 15th, I was feeling like my flare was gone, my symptoms were gone and I was feeling better, so he put me on a slow decrease. That is when the side effects really started. I became very shaky, trembling, and feeling like I was speeding around, trying to do 10 things at once, I could only sleep for 2 hours at a time, I had mood swings really bad, I felt like I could not concentrate. I really had to mentally make myself slow down and realize it was the meds. I took myself off all caffeine, and tried to get as much sleep as I could. I have been weaned off it now, and am back on prednisone only, since Jan. 5th, and the only side effect I am having now is my hands still shake a bit. (I am hoping that goes away!) My last labs were all back to normal, and no more red blood cells in my urine. So, obviously it works for me, but I guess I can say that if I had to choose between the Decadron and a Rituxan Infusion, I would definitely talk to my Rheumy about the pros and cons of each. It was just really hard going through the side effects of the Decadron. But like I said before, I didn't begin feeling these until I was going down on it, so maybe that's just how it effects me. I would be interested to know if anyone else has taken Decadron, and what their experience was like. I hope this all made sense, and was not too confusing. Patty, I pray that you get good results with the Cytoxan infusions, and keep this monster wegeners away!!! Blessings and Love and Prayers to you,

[PattyL]

Hi Lily, Happy to hear you are off the Decadron . Sounds horrible! As for me I got the cytoxin everything seemed ok but then I got sick with shortness of breath very scary and I tested positive for flu B I was hospitalized for 10 days. Also a upper respertory infection. I thought i would never get out f the hospital. They stopped the Imuran while i was there. I also developed anxiety so bad i would shake and that also affected my breathing. I'm home now i have physical therapy twice a week.Trying to build up strength, my heart rate is elevated so that's not good. Dr gave me a new bp med that hopefully will help to lower heart rate. when i get strong enough i will go to pulmonary rehab. Went to Dr yesterday lowered pred to 20mg no Imuran and they want to start infusions again in a few weeks. Not looking forward to that. I have kidney and lung involvement so its a challenge. I have never been so sick . I hope you stay well and healthy as possible. Take care. Prayers,love and blessings to you.