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Started IVIG

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Old 01-25-2018, 10:52 PM   #11
Barbi-girl
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What is the typical timeframe, in terms of days, before feeling positive effects of 2 days of IVIG infusions? I just about given up when ,today, I felt stronger and could walk unaided! That is 6 days after the 2nd infusion.
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Old 01-27-2018, 11:39 AM   #12
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Still feeling stronger at day 8 following 2nd IVIG! How long will it last? My Neuro has stated I will not be given any further infusions because I did not get an immediate response. Looking for a new Neuro but want the truth from real patients on lasting effects.
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Old 01-27-2018, 11:50 AM   #13
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Glad you are getting some relief and even more glad you are finding a new doctor. What a jerk! Sometimes it takes time to see what it can do, especially on the first round.

Your effects will likely last only weeks. That's the bad thing about IVIG. It has to be given frequently and since it's so expensive, insurance companies are hesitant to allow it except when in a crisis situation.

Good luck!
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Old 01-29-2018, 04:54 PM   #14
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The relief only lasted 3 days. I’m back to leg and arm weakness to the point of falling and am so disappointed. This doesn’t seem right. Have others gotten such short relief from their first IVIG treatments?
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Old 01-29-2018, 06:35 PM   #15
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My first round was a series of 5 infusions. I got a couple of weeks out of it. So, 3 days from 2 infusions would not be out of the realm of possibility. The bad news is you didn't get a lot of improvement. The good news is you now have two "treatment failures" (prednisone and IVIG) under your belt, which will help you to access some of the more "fancy" treatments like Rituxan or Soliris if needed down the line.

It would be interesting to see how you'd do with a full 5 day loading dose. Plasmapharesis might also get you better relief, but again, it's only good for a few weeks as well. Personally I've never tried plasmapharesis, but have tried (and failed) almost every other treatment.

Last edited by 4-eyes; 01-30-2018 at 08:55 AM.
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Old 02-20-2018, 06:28 PM   #16
Snoel
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I did 84 PlasmaPheresies on a weekly basis but had to get off because of me getting anemic my Iron and RBC were getting extremely low...so now I've been on IVIg for a little over a year every 3 weeks 80g infusions and doing ok, it's not as good as my PlasmaPheresies but keeping me a float and really helped me fight off viruses and infections, my Iron levels are back up and my RBC are 160, when I was on PlasmaPheresies I got shingles!!! real bad because of my system being out of balance. I'm also on a heavy dose of Mestinon and 200 mg of Imuran/Azathioprine daily plus 10ui VitD daily and maintaining a descent lifestyle.
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