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Thread: Infusion IVIG

  1. #1
    Distinguished Community Member BBS1951's Avatar
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    Default Infusion IVIG

    I got another IVIG yesterday. It was a six hour infusion and no side effects.

    They had the Fox News on their TV sets. I couldn't take hearing all that anger. No one was watching and the nurse was kind enough to turn the volume down so low, it was inaudible. Last time it was 24/7 Hurricane Matthew coverage which, although a bit stressful, was welcome to watch as I knew that I would evacuate 24 hours later likely.

    I realize that these infusions have greatly helped the MS as well as the chronic lung inflammation.

    Still in an MS flare, but a few days ago I could feel the coldness of the floor again. I am still walking at least a few minutes.

    I worked two hours this week will try 3 hours for three days next week. Will try to drive 45 minutes to beach this weekend, each way. Not surfing yet. Not until I think I can stand up from sitting on the ground without triggering spasms. The ocean will be too rough to be able to have a buddy control my board in the shallows and simultaneously get me to my feet.

    My friends have been awesome. But I don't want to wear them out too much. Family has been awesome.

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  3. #2
    Distinguished Community Member Lazarus's Avatar
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    I am so happy....we are both very lucky. We have doctors who thought about our MS and about us and tried an approach that made all the difference. I am so grateful.

    I saw my neuro yesterday and we both think my greater improvement in the last months is the result of doing the rituxan infusions closer together. So I am now on the normal protocol of infusions every 6 months.

    You know, I have been so well that I have been overdoing for months or perhaps just living a normal life??????? But I have definitely been overdoing in the last week and now I am sort of in a real funk....nervous that I can not handle things as I have been. So I am thinking that people like us, who experience sustained periods of wellness, have to be aware and seriously deal with the psychological effects of relapses. Imagine! But, since I am depressed I thought it was a good cautionary tale.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member BBS1951's Avatar
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    Yes indeed Laz.

    I left a word out of above post. I meant to say it has significantly improved the MS fatigue.

    Also, just realized this morning my legs don't have that creepy crawly feeling as though they could imminently spasm. That has to be IVIG because it was not good prior to yesterday's infusion.

    I hear you about the psych effects. I went through that last night.

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    Distinguished Community Member Lazarus's Avatar
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    I used to describe the days of my IVIG infusions as days when I crawled into the infusions and went skipping out 8 hours later.

    I did this for 8 years and then the IVIG stopped working. Just like that. The same thing is true of the methylprednisolone infusions that I did for 4 years before that. My neuro pointed out that I was the one who suggested rituxan to him. So, keeping up with research is very important. I always want to have an idea of where to go if I need to switch therapies.

    Best wishes
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member SalpalSally's Avatar
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    I am so happy for you two!!!!!
    Love, Sally


    "The best way out is always through". Robert Frost







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  11. #6
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    Good reports from both BBS and Linda. Congratulations to both.
    Virginia

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  13. #7
    Distinguished Community Member BBS1951's Avatar
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    Today was my six hour infusion. The arm ached during it. When the nurse took the needle out after it was over , the needle was bent.

    I got home and noticed the arm swollen above the elbow. No other symptoms, besides aching, no sign of infection. It appears the liquid didn't go I the vein but went in sub cutaneously.

    Will call the neuro in morning, called my other doc who said it's likely just subcutaneous extravasation. To be cautious, and to cover his butt likely, go to ER. I passed on that. Will keep eye on it tonight and call neuro in morning. It could take days for body to absorb all that fluid.

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  15. #8
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by BBS1951 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Today was my six hour infusion. The arm ached during it. When the nurse took the needle out after it was over , the needle was bent.

    I got home and noticed the arm swollen above the elbow. No other symptoms, besides aching, no sign of infection. It appears the liquid didn't go I the vein but went in sub cutaneously.

    Will call the neuro in morning, called my other doc who said it's likely just subcutaneous extravasation. To be cautious, and to cover his butt likely, go to ER. I passed on that. Will keep eye on it tonight and call neuro in morning. It could take days for body to absorb all that fluid.

    Hello,
    I wondered if you get the IVIg in bottles that they change as each one finishes...? I think each bottle has 10g.
    I had your situation once. After 3 bottles one day I noticed my hand growing huge! The nurse saw the look on my face and came over. They immediately stopped it and redid the injection.

    I learned not to move my arm much so as not to dislodge the needle. But for you, I was thinking, since you did not notice swelling until you got home, the needle most likely became dislodged toward the end of your infusion. Otherwise you would have noticed a HUGE swelling .

    Try not to worry ....I forget what they said but I remember it was not a concern that some was administered subcutaneously.

    I can not wait for my next rituxan infusion. First week of December. After months of excellent health I am experiencing more of my symptoms by the hour!
    Last edited by Lazarus; 11-17-2016 at 04:49 PM.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  17. #9
    Distinguished Community Member BBS1951's Avatar
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    Oh no Laz! You've been my hero, finding treatments that work for you and living a full life. ... I hope things start to improve for you.

    Thanks for the feedback. I know some take the whole treatment sub cutaneously. They do it in the privacy of their homes they stick needles in their own stomach, ew!

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  19. #10
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    The best to both of you,

    ANN
    There comes a time when silence is betrayal.- MLK

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