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Personal update

jisenhour Message
1 Jun 2016, 05:46 PM

Hello every one. I've had some interesting experiences the last few months and I thought I'd describe them here where they may come in handy for some one. I've been on IVIG for a few years now, and it's helped significantly but I've always had breakthrough attacks. A little while ago I spent a week in ICU, and during that time my Dr. consulted with Dr. Druey, and determined that the level of IVIG I was receiving was low. At the time I was getting 1.5 ml divided into two infusions two weeks apart. We decided to up my infusion amount to 2.0 ml and modify the schedule to once every 4 weeks. After that I had minor breakthrough attacks until the last couple of months when I had two relatively major (ICU visit) attacks in the last week of my cycle in a row. Now we've adjusted my cycle to maintain the same amount of IVIG but the schedule is once every three weeks, and we'll see how that works. Not looking for answers but I thought that this may be useful to some other forum members. If you have any questions please feel free to ask. Jeff
aporzeca Message
1 Jun 2016, 10:29 PM

I'm so sorry to get this update, Jeff! Were your doctors able to confirm that you had experienced hypotension, hemoconcentration, and/or hypoalbuminemia upon arrival at the hospital? And how many grams (rather than ml) of IVIG were you originally, and are you now, getting? And thanks for keeping Dr. Druey well informed. I hope these adjustments do the trick!
jisenhour Message
2 Jun 2016, 12:27 PM

Dr. Druey has been nothing less than a God send. He;'s always been available for consultation from any of my regular, or ICU Dr.s. He's a true gift. I'll get more details about my dosage, and post here.
Arielbatt Message
16 Feb 2018, 12:02 PM

Hi Jeff, could you tell us how you have followed your treatment? and if you can confirm with Arturo's questions if you have had the typical parameters of an attack? Thank you.