plasmapheresis through Bard Clearvue Power port French 6?

This topic contains 4 replies, has 3 voices, and was last updated by  cer100 1 month, 1 week ago.

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  • #116501

    edith
    Participant

    My daughter’s neurologist is under a lot of pressure to switch my daughter from IVIG to plasmapheresis, due to the IVIG shortage, to treat her chronic GBS/CIDP.

    She gets 1 mg/kg every 3 weeks because she did not improve getting IVIG every 4 weeks for 6 months.

    Because my daughter experiences wearing off symptoms 4-5 days before her IVIG infusions it’s important to me that her treatments not be missed or spaced further apart due to the IVIG shortage.

    I was wondering if anyone on this forum had received plasmapheresis through a Bard Clearvue Powerport French 6 or any type of French 6 sized line.

    Thank you,
    Edith

    #117116

    cer100
    Participant

    Did you mean 1gm/kg? My IG isnt nearly as effective as it used to be.

    Ive had central lines for PlEx but after infections, I have been looking at ports. Trouble finding good answers to my questions even from local IR dept. Ive gathered there is one other port manufacturer I am researching beside BARD that is used for PlEx. Im not getting anything with exposed lumens. I also want a port I can use for other things like infusions. Will be following this thread.

    #117118

    edith
    Participant

    Yes I meant 1 g/kg thanks for the correction

    We’ve had a consult with an interventional radiologist and her current port can’t be used for plasma exchange.

    Bard makes a double lumen catheter for PLEX and they have a low profile PLEX port in the works but it’s not available yet.

    I think what I’m learning is that while the studies say IVIG and plasmapheresis are equally effective this is only true in the aggregate but individuals sometime respond better to one than the other.

    My daughter had a hyper viscosity Syndrome even before her first round of IVIG, which the IVIG made worse before it made it better…

    I think she would have benefitted from PLEX except that the physicians were afraid of lowering her already low blood pressure if they used PLEX.

    A reasonable concern to be sure but I notice here and on other forums people who have gone into remission have had PLEX followed by IVIG and another agent.

    So it seems to me the best chance for remission lies in using multiple treatment modalities.

    If you switch to PLEX I hope you will post to this thread and share your experience.

    #117119

    Jim-LA
    Participant

    Various types of ports have been reviewed in the forums here and the discussion threads may be relevant to this new thread. Here are some of the threads that may provide useful info:
    https://forum.gbs-cidp.org/forums/topic/please-educate-me-on-plasmapheresis
    https://forum.gbs-cidp.org/forums/topic/to-port-or-not-to-port
    https://forum.gbs-cidp.org/forums/topic/port-a-cath-2
    https://forum.gbs-cidp.org/forums/topic/port-placement-in-upper-arm

    #117130

    cer100
    Participant

    I think she would have benefitted from PLEX except that the physicians were afraid of lowering her already low blood pressure if they used PLEX.

    Ive had a few PlEx treatments, each 5 cycles. Only 1 of those cycles did my BP drop. It was really quick and pretty crazy if not scarey the symptoms I started having. But every one since BP has stayed OK.

    I’m probably due again soon and am researching ports. Have started getting infections more when using central line.

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