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  • IVIG and the unpredictable goodness

    Posted by price-wooldridge on December 10, 2020 at 6:00 am

    My IVIG approaches and is just three days out as I write this. The last couple of weeks I’ve been sailing into this one, feeling pretty darn good. Not so last month, when I struggled, beginning six days out. What’s up with this immunoglobulin? It often seems just so unpredictable, month to month. Is it the LEMS? Is it the variability of the pooled antibodies I get each time? Both? It’s a quandary. But I can say unequivocally, the immunoglobulin is probably the most impactful of my treatments, when it’s going good. How about you with IVIG?

    price-wooldridge replied 3 years, 3 months ago 2 Members · 2 Replies
  • 2 Replies
  • searching4answers

    Member
    December 15, 2020 at 3:49 pm

    Price, I get the Lambert Eaton News in my inbox and read the posts and so much of what you say has hit home. I mean to answer you but then I get “squirreled”. I finally decided I just had to stop all my research & other things and just write. Hopefully I can get all my answers in the correct forums as I have never been “online” before. I am still waiting for a diagnosis but I was on IVIG therapy for 15 months. On the recommendation of a neurologist I discontinued so that they could re-test autoimmune antibodies. When I 1st started, the IVIG was every 4 weeks. After the first couple of doses I Really noticed a difference in how well I  could climb stairs, but by the 3rd week, I was exhaused & dragging. I keep notes on how I feel & also noticed that the IVIG started “wearing off” after 7-10 days. So I asked my neurologist to divide the monthly dose so that I got 1/2 every two-weeks. I figured that every 2 weeks would prevent the crashes. That did work to some degree but then the IVIG seemed not to help me as much as when I 1st started it. It’s almost as if I built up a “tolerance ” to it.  For the IVIG newbies, my very first IVIG course was a TERRIBLE experience. It was 5 days, a new nurse came to the house every day, they ran the infusion rate way too fast for My body & I was NOT hydrated enough & my arms reacted to leaving in the catheter. After the 3rd time, I had 2 nurses that figured out I needed a flow rate of no more than 90, 500ml saline before & after AND my arms would not agree to leaving in a catheter. Once all the bugs were worked out, the IVIG therapy went fairly smooth. So not to scare anyone off, just educate yourself on the process before hand so you know what to expect and don’t be afraid to ask questions and insist on changing things if you have a headache or are uncomfortable in any way. Everyone’s body is different. Some don’t need as much hydration, others like me need a lot.

  • price-wooldridge

    Member
    December 15, 2020 at 5:00 pm

    Thanks for getting back @searching4answers! Yes everything you describe is similar to me. I too had a horrible experience with the first loading doses. We currently ramp up from a flow rate of 30 up to my max rate, 150. It works for me with no adverse reactions. We just keep on!

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