Lambert-Eaton News Forums Forums Treating LEMS IVIG and Plasmapheresis Starting IVIG Immunoglobulin? My Routine and Tips

  • Starting IVIG Immunoglobulin? My Routine and Tips

    Posted by price-wooldridge on December 15, 2021 at 1:00 pm

    Recently I’ve spoken with several people trying to or about to start IVIG immunoglobulin therapy. Everyone has lots of questions about what to do, what it’s like, and what to expect.

    So, here’s my routine to get ready for an IVIG infusion.

    The night before, I pull my gym bag with supplies for my infusion days. In it are a lap blanket, personal sundries, and my wireless, noise-canceling headphones. I’ve got music albums pre-loaded onto my iPhone for my listening pleasure. There is one sealed bag of infusion supplies such as caps and over-wraps I’ve collected along the way in case they don’t have something. The morning of, I add my iPad (charged!) to the gym bag.

    I pull down my Igloo cooler bag and, in the bottom, put a large frozen cold pack. Then I add a large bottle of my favorite sparkling beverage (Pellegrino sparkling water), a couple of fruit cups and pieces of chocolate, and a spoon.

    Before I head out the door, I half-fill a large Yeti tumbler half full with sparkling water, and I’m out the door! Gym bag. Igloo cooler bag, and Yeti tumbler.

    So what’s the takeaway? My infusion day will last somewhere around 4 hours. I want to be comfortable, self-sufficient and entertained the whole time.

    I hope this helps you plan for YOUR next IVIG infusion.

    price-wooldridge replied 1 year, 9 months ago 3 Members · 3 Replies
  • 3 Replies
  • gary-chudd

    February 8, 2022 at 11:01 pm

    How did you feel after receiving IVIG, I’ve had it four different times, each was for four days and about 4 hours. The first time I got it I got such a severe migraine headache they reduced the dosage which helped. I also had it done twice at home which was more convenient and they gave me a lower dosage to prevent any headaches. Did you see an improvement in your symptoms and how long did it take to see the improvements.


  • searching4answers

    February 16, 2022 at 4:48 pm


    I just found out that there actually is an organization called ” Immunoglobulin National Society”  that has everything about Ig. They are having a free patient conference 21-22 May which you can go to their website and register. It will cover everything from Ig side-effects to different brands to insurance problems.

    Hope this helps

    still Searching4Answers

  • price-wooldridge

    February 16, 2022 at 4:50 pm

    @searching4answers thanks for sharing this information! So many of us are on IG therapy for LEMS, it’s great to have this organization as another resource.

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