Lambert-Eaton News Forums Forums Treating LEMS IVIG and Plasmapheresis How’s that immunoglobulin workin’ out?

  • How’s that immunoglobulin workin’ out?

    Posted by price-wooldridge on July 17, 2020 at 11:45 am

    Got the call yesterday that my immunoglobulin is on it’s way to the infusion center for my visits next week.  Pooled antibodies in immunoglobulin have been a huge part of my LEMS treatment plan from the get go.  I’ve had some reaction problems with it, but we’ve addressed those as they’ve arisen.  It’s been smooth sailing (infusing) recently.  There have been times, post infusion, which have been literally euphoric for a few days, like the LEMS wasn’t even there.  That passes unfortunately, and sometimes I don’t get that at all.  The big payoff has been the suppression of LEMS crashes I was having.  I can’t remember the last time I felt pasted to the chair, or struggling just to get to the bed.

    How’s immunoglobulin working out for you?

    price-wooldridge replied 3 years, 4 months ago 3 Members · 4 Replies
  • 4 Replies
  • ashley-gregory

    July 17, 2020 at 12:28 pm


    I’m really glad to hear things are still going well for you with IVIG! I have also had mostly smooth sailing in the three years that I’ve been getting it! It took a little while for me to develop a routine during my treatment and get a pre-medication regimen that worked best for me to help with the side effects but now things are smooth for the most part. I look forward to having the couple of days off a month to relax even though I’m stuck at the infusion center for most of the day. I’ve had some days like that as well, some days I also forget I have LEMS. I still have some days where I’m pasted to the chair but those are usually from me overdoing it. I know my limits for the most part but I also push them pretty hard some days.

  • price-wooldridge

    July 17, 2020 at 3:33 pm

    I think you hit on it Ashley, getting your mind and your body into the routine.  Let’s face it, starting immunoglobulin and infusions is stressful and can come with reactions until your body gets used to it.  It can take time to reach full effect too.  Taking immunoglobulin, at least for me, and it sounds like you too, has been well worth the journey.

  • tescha

    July 20, 2020 at 8:21 am

    Price, I’m glad to hear that you found a combination that is working good for you.   My pre-medications have been working well for me but I still get SOB and tachycardia after treatments for about 24 hours.   Initially when I started IVIG in Feb of this year I had great improvements which typically lasted 2 weeks then I would decline until next treatment.     However, my last two IVIG treatments haven’t given me improvements of my symptoms.   So that has me concerned since Initially the treatments worked so well and now I see now improvement after treatment.



  • price-wooldridge

    July 20, 2020 at 8:30 am
    1. Tescha, I completely understand the frustration when the immunoglobulin doesn’t work as expected.  Have you considered asking your neuro about a change in brands?  I spoke with mine once about brands, and she said she didn’t pay much attention to that.  That was a bit frustrating because I hear anecdotal reports of differences in brands and how people like one or another.  Just a suggestion.  I must say my journey with IVIG has had its ups and downs too.

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