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Thread: preparing for my first RTX

  1. #1
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    Default preparing for my first RTX

    Hi.
    If all get well I will have my first RTX on next wednesday.
    what complications can be ?
    what do I have to watch out for ?
    Is it true that there is life risk in the treatment ?
    I read something about brain virus complication which is fatal in 1:25000 cases. do you know any thing about it ?
    how it feels like ?
    Im afraid Im going to vommit and have diarrhea.
    Im afraid my blood presure, which is always low, will go down. I can faint. can I ?
    Please tell me everything that can help.
    what to take with me ?

    I dont sleep well.
    a lot of fears....
    and hope.

    thanks.
    Last edited by Alysia; 03-16-2013 at 06:32 AM. Reason: MISTAKES
    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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    Most people don't have any noticeable reaction. The most common advice is to bring something to read or help you get through the hours it might take. The first one tends to be done a lot slower in case there is any reaction. I usually slept through mine. There are risks of course with any treatment but most people get through it fine or it wouldn't be in widespread use and the now considered the treatment of choice for most severe cases. You will be closely monitored if the people doing this are competent and experienced and you should do fine. Hope it is successful in taming things down for you.

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    Hi Alysia,
    I just started RTX 2 weeks ago and agree with drz's post above. For some reference: my first infusion took about 7 hours, my second 5 1/2, and the one today took about 4 1/2... I have my last one next Friday; of course the time can vary. The only side effects I had was some chills and slight nausea, but they have warm blankets which helped... I was fine during the infusion today and had no side effects so I didn't need the blankets. If you feel anything during the treatment let the nurses know, they should be constantly monitoring you, but if you don't say something they won't know how you're feeling. I usually take Benadryl before and nap through part of it so you could try that. I also take a book and music to listen to, and my friend comes with me so we usually entertain ourselves. As for how it feels... I don't mind needles and other than a needle I don't feel anything. Hopefully the infusion goes well and you get well soon!
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    I haven't had it Alysia, but I wish you all the best for Wednesday and I hope it works to get you closer to a drug free remission
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Thank you very much, drz, rebekah & michelle.
    If anyone else can give me more info, I will be gratefull.
    I hope Im not posting here too much... if so, please tell me...
    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.

  6. #6
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    Alysia,

    I had multiple reactions, as I was having the infusion, my tongues started to swell and the roof of my mouth got real hot. They stop the infusion and gave me steroids,benadryl and tylenol. After about 6 six hours after it was over I started coughing, couldn't breath,got a high fever and my throat started closing. So I took more steriods and tylenol and came out of it in a couple hours. So when I had my next infusion-2nd of that series, they told me to take benadryl and tylenol every 4hrs for 24 hrs and didn't have any reactions. Good luck to you, not everyone has any reaction only the wiped out after effects. I will be thinking of you on Wed.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Quote Originally Posted by Alysia View Post
    Thank you very much, drz, rebekah & michelle.
    If anyone else can give me more info, I will be gratefull.
    I hope Im not posting here too much... if so, please tell me...
    No, you are not posting on here too much! There isn't a limit. There are some very active posters on here, and that is fine. Most of all, good luck with your RTX treatment! I hope it goes as smoothly as possible with minimal discomfort or side effects, and that it clears up your WG symptoms in a big way!
    Anne, dx'ed April 2011

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    thank you Jana for the info, it helps.
    thank you Anne for the support, you are always there, warm and caring.
    I am very gratefull to everybody here, you are amazing.
    Im sending you my love.

    (I wanted to send flowers, but couldnt insert the Image. another thing to learn....)

    Last edited by Alysia; 03-20-2013 at 06:18 AM.
    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.

  9. #9
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    Hi,
    now I am after it, and at home (sweet home...) Im writing here
    my experience (for next "generations"): after meeting the doc, they gave me dexamol & Phenergan and in the IV at first 120 mg of some steroids (makes me headache). only then they started the RTX. I had only one phenomenon: my blood pressure was getting down all the time, about 80/40 so I had to drink a lot of tea. I felt dizziness, heavy, like drugged. I couldnt sleep ,probably because my need/fear to be in control.
    I can say that it was possible. not so bad at all. although Im exhausted

    now lets see how RTX is going to fight WG...
    and I was the only weggee there. still I never met face to face another weggee.
    Thank you for being, for being here, and for being the way you are.
    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.

  10. #10
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    Reading these descriptions, I'm STILL glad I haven't had to take RTX! But I'm glad you got through the experience OK and am sending you best wishes to knock out those WG symptoms and get you into remission!
    Anne, dx'ed April 2011

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