Second Round of IVIG

This topic contains 4 replies, has 3 voices, and was last updated by  Amy Martens 3 days, 9 hours ago.

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  • #116497

    Amy Martens
    Participant

    I was diagnosed with GBS on 18 Jun 19. Had 5 days of IVIG and started improving since being discharged from inpatient therapy I started home physical therapy and have been getting a little bit weaker. The neurologist said I could go back to the hospital for another round of IVIG or not… I am wondering if anyone has anything like this happen in their recovery and if they know if a second round will help.

    #116499

    angels abound
    Participant

    I would recommend getting IVIG if your feeling worse as long as you can get it(they will cut you off depending on your insurance) and it seems to help. I had IVIG off and on for almost 18 months. I stopped because although initially it seemed to help me after several months it didn’t seem to be doing anything. Because I am not one to take any medication, my neurologist said I could stop IVIG but we wouldn’t know what would happen! If I got worse I could begin again. That was more than a year ago. I was diagnosed with many different autoimmune diseases amongst which was Guillane -Barre and I still have so many issues Most of the time I am able to manage my symptoms but I would definitely get IVIG again if I spiral down. Good luck and may peace be with you!

    #116512

    Amy Martens
    Participant

    Thank you sorry for the late reply I’m back in the hospital. I am so scared that I am going to have to get Plasmapheresis. I literally passed out with my IV. My heart rate drops to 42 and I get sweaty and nauseous. I can’t help it. It’s really embarrassing that I am this way.

    #117087

    Thomas Banditelli
    Participant

    Hi Amy, I had 20 treatments of IGG at the rate of four treatments a month. Only temporary change for the better. Now in reverse and getting more numbness in my ares and legs. I had a friend that did the plasma exchange treatment and he is good after 15 years. Wish I should have opted for Plasmapheresis.
    Full recovery rate is very high. Wish you the best of luck and know the Lord is watching over you.

    #117089

    Amy Martens
    Participant

    Thank you. My hands are coming back to normal and I have some strength back so we will see. The docs said if things don’t improve then Plasmapheresis is the next step.

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