Lambert-Eaton News Forums Forums Treating LEMS IVIG and Plasmapheresis At the infusion center, what do you bring?

  • At the infusion center, what do you bring?

    Posted by price-wooldridge on July 22, 2020 at 10:32 am

    Well, here we go!  My first of two infusion days each four weeks is this morning.  Each day I spend about 4 hours with my friends there, but I’m pretty much left to provide my own entertainment.  You’re asking what I take, right?  My main bag has a lap blanket, a few Gluten-free snacks, my wireless headphones, and my iPad.  I take a secondary insulated bag, for my water.  It has a pocket for my pill holder and sundries.  And finally, who could go without their smart phone.  Do you bring anything different?

    price-wooldridge replied 3 years, 4 months ago 2 Members · 2 Replies
  • 2 Replies
  • roberta

    July 28, 2020 at 2:40 pm


    I go for my infusion every 6 weeks now.  I was diagnosed 11 years ago at University of Wisconsin/Madison hospital. I was blessed to be seen by a doctor who had studied under Dr. Lambert at the Mayo Clinic.  He had a very good idea from the beginning that I had LEMS.  So it was only 6 months before I started treatment after no cancer was found.  I had a bad reaction to Imuran and Methotrexate, so I started on the IVIG right away.  I also take Mestinon.  I began with infusions every 4 weeks, but have been able to stretch it out now to 6 weeks.  I always take a book to read to help pass the time.


  • price-wooldridge

    July 28, 2020 at 3:50 pm

    Wow!  To have worked with Dr. Lambert!  Those are some credentials.  I’m glad to hear you have been able to stretch out to 6 weeks!  I just had a crash two days before my next 4 week infusion, so I guess that won’t be happening here.  I started with Mestinon first but we quickly added IVIG.  Firdapse was not FDA approved at the time.  Immunoglobulin has great effect so I’m glad we got there early.

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