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Thread: First Cytoxan Infusion ...

  1. #11
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    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

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  3. #12
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    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!

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  5. #13
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    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

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    Default Re: First Cytoxan Infusion ...

    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.

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  9. #15
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    Default Re: First Cytoxan Infusion ...

    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,
    Life is a Gift~ Lilly

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