Lambert-Eaton News Forums Forums Treating LEMS IVIG and Plasmapheresis Getting a Port for IVIG Immunoglobulin Infusions

  • Getting a Port for IVIG Immunoglobulin Infusions

    Posted by Price Wooldridge on March 10, 2022 at 7:00 am

    The other day I was visiting with a friend who has Spinal Muscular Atrophy (SMA). We were talking about his possibly getting a port for infusions of a new medication for his condition. It started me thinking again about why I got a port for my immunoglobulin IVIG infusions. The reasoning and logic are basically the same.

    First, here’s a graphic to show what a port looks like and where it’s placed.

    [caption id="attachment_19658" align="alignnone" width="300"] AP silhouette of man with central line and subclavian port SOURCE: 89223_1 MOD: Removed PICC, duplicated half of silhouette on left, added central line and port
    http://www.bardaccess.com/products.php?category=Implantable%20Port%20Devices
    1)Bard Access Systems (2005). “Nursing PICCs.” retrieved at: http://www.bardaccess.com/nurse-perqplus-picc.php (2) Cancerbackup (2003). “PICC lines.” retrieved at: http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/PICCline
    3) Consultant, Dr. Erlich[/caption]

    Why get a port? Here are some reasons you might consider a port.

    How easy are you to start an IV on? For me, it was difficult at times, often taking several tries. The more tries, the more stress for both you and the nurse.

    How long will you be doing infusions? For me, immunoglobulin infusions are part of my LEMS treatment plan which is ongoing. LEMS is not a curable disorder.

    How many days will each infusion take? For me, I do two days of infusions together, which means taking home overnight whatever access we’ve used. Taking home an IV in my arm or hand was often not comfortable.

    How often will you need infusions? Ports need to be accessed and flushed every 4 weeks. As it happens, my infusion cycle is every 4 weeks. Perfect!

    Deciding to get a port for IVIG immunoglobulin or other medication in your LEMS treatment plan is a personal decision between you, your neurologist, and your infusion team.

    I hope the reasoning points I’ve provided will help you make a good decision.

    Ashley replied 2 years, 3 months ago 3 Members · 3 Replies
  • 3 Replies
  • Heather

    Member
    March 18, 2022 at 10:42 am

    I’m back to the same question as I am having another flare of LEMS after having it fairly controlled for the last two years.  I also have an immune deficiency so I need to keep that in mind.

    when I have done ivig for LEMS my dose is much higher than for immune deficiency.  I assume that’s the case for others too.  This time my neurologist is considering 30g/day x 5 days as a loading dose… What are others taking as their loading then maintenance dose?

    • Price Wooldridge

      Member
      March 19, 2022 at 8:02 am

      @heatherbluephoenixart-com Hi Heather! I can’t remember my loading dose schedule, but I do 90 grams every 4 weeks. This is a very individual assessment due to an individual’s other medical issues. I do find IVIG very effective for me. Getting the full goodness from adding immunoglobulin can take up to 6 months so be patient in your assessment with your neurologist.
      We have a whole section on IVIG and I’ve posted many topics there, so please browse.

  • Ashley

    Member
    March 22, 2022 at 8:57 am

    Hi @heatherbluephoenixart-com

    LEMS patients are recommended to receive “high dose” IVIG. The dose itself is dependent on your weight.

    Usually the loading dose is your total dose spread out among 5 days.

    For LEMS, usually the dose is 1mg of IVIG per Kg of body weight for two days in a row.

    I’m around 60kg, so I receive 60g of IVIG for two days in a row, total dose= 120g IVIG per month (4wks.)

    So, my loading dose was about 30g I believe. It’s been about 6 yrs since I had a loading dose.

    Here’s an article on dosing:

    https://pubmed.ncbi.nlm.nih.gov/15959667/

    If you have more questions, let me know!

Log in to reply.