Home Forums General Discussion IVIG's

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  • #302598
    troysmom
    Participant

    IVIG's are used to boost the immune system, my son had them in the past when he was on suppresants such as methotrexate, prednisone, plaquenil, cyclosporine, etc….

    but with my son's illness from my understanding he has an over active immune system, that is so aggressive it attacks it's own body, when he is not on the above lsited suppresants he does very well in not getting colds, flus etc it is only when he is on those suppresants does he become more succeptible (sorry if my spelling is bad) to getting colds and infections.

    So why would someone with an over active immune system need an IVIG, at the end of September he will be starting IVIG's and rituxan, is the rituxan a suppresant is that why he might need the IVIG.  This is a question I intend to ask the doctors but I wanted to get people's thoughts from here as well.

    #333177
    Maz
    Keymaster

    [user=1358]troysmom[/user] wrote:

    So why would someone with an over active immune system need an IVIG, at the end of September he will be starting IVIG's and rituxan, is the rituxan a suppresant is that why he might need the IVIG.  This is a question I intend to ask the doctors but I wanted to get people's thoughts from here as well.

    Hi Troysmom,

    Yes, Rituxan is a powerful immune suppressant. The IVIG will no doubt be used in conjunction with Rituxan to help Troy fight any opportunistic infections while on this drug.

    You can read more about the mechanism Rituxan's actions here:

    http://en.wikipedia.org/wiki/Rituximab

    I know this must be a very hard decision to make, Troysmom, and empathise, so I will not try to persuade you one way or another, but would recommend you learn as much as you can about this drug and possible side-effects beforehand to help in making an informed decision.

    Peace, Maz 

    #333178
    TischSEB
    Participant

    Hi Troysmom,

    I always understood the IVIG to be more of a “temporary” immunity, which displaced the presumably malfunctioning one for 4-6 weeks (until the next infusion). We were doing well for a while with just IVIG and weaning down on prednisone, but recently have found that CPKs are still going up (when they get too high, we know there will be increased disability). My own theory is, that if I accept that the immune system attack on muscle is actually in response to a mycoplasma infection in the muscle (and not the muscle itself), then the IVIG is only blocking the immune response, the infection is being allowed to flourish, and the problem will continue to worsen. I think the right metaphor is that you need to lower the river level, not keep raising the bridge…
    Good luck!

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