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Thread: My introduction

  1. #11
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    Default Re: My introduction

    Yes, I agree with Alysia. That's what they did last week when I had my rituxan again (2nd time this year). I go for the 2nd round of the 2nd infusion this Thursday. I'll pay attention to what they are putting in the IV. For sure, the benadryl before. I'll pay attention to how much steroids they include with the rtx. But they stopped every 15 or 20 minutes before increasing the speed of the infustion to make sure everything is okay.
    Like I said, I'll pay close attention on Thursday when I go.

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  3. #12
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    Default Re: My introduction

    Quote Originally Posted by jmq View Post
    Yes, I agree with Alysia. That's what they did last week when I had my rituxan again (2nd time this year). I go for the 2nd round of the 2nd infusion this Thursday. I'll pay attention to what they are putting in the IV. For sure, the benadryl before. I'll pay attention to how much steroids they include with the rtx. But they stopped every 15 or 20 minutes before increasing the speed of the infustion to make sure everything is okay.
    Like I said, I'll pay close attention on Thursday when I go.
    Streoids in IV can be 100mg or 120mg, both are ok.
    Sometimes they consider body's weight.
    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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  5. #13
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    Default Re: My introduction

    Hello and welcome aboard our world.
    About 6 yrs ago when my adventure started, I was given an IVIG at the normal speed. In around 5-10 min. pain began to grip my low back and quickly traveled up the "pain scale" and made me say hay, Hay, HAY!! My nurse ran in and turned pump off. This made the pain stop. She told me because of kidney damage this will happen to me. By turning the pump down the pain stopped. She said that sometime a product that is too cold will also hurt. Now when I get blood or RTX, saline, anything I will tell the nurse to go slow. Now no problem.
    I know this is not hives or a allergy, but it is a reaction that my body does to me.
    Now there is more than one drug to send you to remission and I think that each one has different side effects. I think that RTX is the newest "go to" drug with the least often side effect.
    Best wishes on your newest journey.

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  7. #14
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    Default Re: My introduction

    Hi Alysia,

    I don’t know how much steroids the nurses gave me to begin with but they gave me Benadryl and Tylenol too with time to let it all take affect. I’ve spoken with the doctor and she wants me to have the cyclophosphamide once a month for 4 months now. So I am waiting again for insurance approval. I’m not too thrilled about having to take this new medication with the side affects and plus having it stretch out over 4 months too! I’ll just be feeling better I’m sure and have to go in and do it all over again. I’m really feeling down about all of this right now. Trying to stay positive but have a real hard time doing that! I’m glad I can come here and see how others are dealing with GPA.
    Ellen

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  9. #15
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    Default Re: My introduction

    Jerry,

    The nurses asked me if I had pain in my back but I didn’t. My head started to itch like crazy and I broke out behind my ears and all along my neck and side of my face in the hives. When my throat started to make weird noises and it was hard to breathe I pretty much freaked out. Luckily the nurses were right on it to give me more Benadryl. But that shut it down for the day and now the doctor wants me to have cyclophosphamide and I hope I don’t have a reaction to it. I am not thrilled about having to take it in the first place because of the side affects but I want to get this treatment over with. I just wish the Rituximab had worked for me. My son is a third year Pharmacy student and he describes Rituximab as a sniper just taking out the B cells and leaving everything else alone while cyclophosphamide will just be like a hammer and take everything out. I just want to get things going!
    Thanks for taking the time to respond and to listen to me.
    Ellen

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  11. #16
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    Default Re: My introduction

    Hi Ellen,
    I understand your concerns.
    What you had, was an allergic reaction. I think that @Aneinu 's son had a similar one. Maybe he can consult more about it.
    You have the right to get the info from the nurses and to check what was given to you at that day. If you will find out that they didnt give you 100 IV steroids before, I think you can try again the rtx, this time as it should be.
    Hang in there. This way or another, you will soon fight back the WG beast.
    We are with you. Please update us.
    Sending prayers.
    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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  13. #17
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    Default Re: My introduction

    Quote Originally Posted by Alysia View Post
    Hi Ellen,
    I understand your concerns.
    What you had, was an allergic reaction. I think that @Aneinu 's son had a similar one. Maybe he can consult more about it.
    You have the right to get the info from the nurses and to check what was given to you at that day. If you will find out that they didnt give you 100 IV steroids before, I think you can try again the rtx, this time as it should be.
    Hang in there. This way or another, you will soon fight back the WG beast.
    We are with you. Please update us.
    Sending prayers.
    Hi Ellen,

    Sorry to hear about your ordeal.

    Yes, @Alysia is correct. My son (22 now) had four bouts of rtx. Two of the times (and perhaps a third) they couldn't finish the dose because of his reaction. One time they needed to shoot him with 100 mgs of something in order to get him breathing again. He didn't get the hives, but they called it an allergic reaction to the rtx. Personally, I believe it's because of the speed that it's given. He did have an allergic reaction once a week afterwards, but they're not sure if it's related.

    Bottom line, after four attempts and after the wegs returning each time, the doctor switched him to cyclophosmide (sp) for 90 days. It was something we wanted to avoid, but we had no choice. He's finishing it now and the plan is to begin maintenance with methotrexate. We will say how that goes. Thank God, he is feeling well now (chronic coughs and cold, some fatigue, no real hair loss besides his hereditary genes) and able to study in school.

    Wishing you well.

    And all my brothers and sisters here.

    Take care.

    A

    Sent from my SM-G920V using Tapatalk

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  15. #18
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    Default Re: My introduction

    Quote Originally Posted by Aneinu View Post
    Hi Ellen,

    Sorry to hear about your ordeal.

    Yes, @Alysia is correct. My son (22 now) had four bouts of rtx. Two of the times (and perhaps a third) they couldn't finish the dose because of his reaction. One time they needed to shoot him with 100 mgs of something in order to get him breathing again. He didn't get the hives, but they called it an allergic reaction to the rtx. Personally, I believe it's because of the speed that it's given. He did have an allergic reaction once a week afterwards, but they're not sure if it's related.

    Bottom line, after four attempts and after the wegs returning each time, the doctor switched him to cyclophosmide (sp) for 90 days. It was something we wanted to avoid, but we had no choice. He's finishing it now and the plan is to begin maintenance with methotrexate. We will say how that goes. Thank God, he is feeling well now (chronic coughs and cold, some fatigue, no real hair loss besides his hereditary genes) and able to study in school.

    Wishing you well.

    And all my brothers and sisters here.

    Take care.

    A

    Sent from my SM-G920V using Tapatalk
    Thank you, Aneinu. I am glad that your son is doing well with the ctx. It is a powerful drug. Sending prayers for him and your family from Israel. Shabat Shalom.
    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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  17. #19
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    Default Re: My introduction

    Alysia,

    would the the amount of steroids be the same for Cyclophosphamide? That is what my doctor wants me on now instead of the rtx. Would everything be the same like giving me Benadryl, Tylenol and steroid and letting everything start working before giving me the cyclophosphamide? And again just a real slow drip?
    All of you have been real helpful! Thank you!
    Ellen

  18. #20
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    Default Re: My introduction

    Aneinu,

    Having an allergic reaction along with trouble breathing must have been really hard with each treatment for your son. I certainly freaked me out with my allergic reaction. I wasn’t totally surprised though, because I am allergic to everything. I just spent 5 years going in every other week for allergy shots. Sometimes I think that is why I am allergic to everything! I’m glad he is doing better and hopefully the cyclophosphamide was not too bad for him. I haven’t seen much said about cyclophosphamide from the group. I would love to see what people that has taken it reactions are for it.
    Thanks again
    Ellen

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