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We Are Going To Try An Ivig Treatment...


mngirl
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Well, things just seem to be getting worse and my doc is trying to help me find ANYTHING to help. So, we are going to try an IVIG treatment. I am waiting for my insurance to approve it. It is a MAJORLY expensive for a small treatment (just 50mg evey six weeks)...my doc is going to give me a HUGE dose (600mg in 5 days). I guess it takes thousands of people to get just one dose and it takes about a year to produce that.

My doc is hoping that this treatment helps set things back in place. My dizziness. lightheadedness and vision problems are getting worse. Just when you think you have them under control with medication, it starts getting worse. My doc thinks that my body is finding a way to fight through the medication...then it take more to fix it...we are at the highest doses I can take on a lot of my meds...so...maybe this will work.

I will let you know. I was just wondering if anyone else has had a treatment like this and what the results were.

I haven't posted in a long time and haven't had time to read much of the posts...I hope eveyone is doing okay.

~Lisa

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I hope the IVIG works! My doctors have also mentioned this to me if my/our lyme disease hypothesis doesn't work out. I've heard for some it's a miracle cure (I read a paper a few weeks ago about people who were wheelchairbound with MG getting up and running around after treatment). I'll keep my fingers crossed for you!

And please let us know how it goes!

-Lauren

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i started a trial of IVIG this july. if you do a search you'll find lots of my posts regarding the treatment. i'm pretty certain that i'm the only one on the site who has tried IVIG for dysautonomia, though i know of two others who have had the treatment for other reasons (immune deficiency, MG, etc).

it's used under the theory of an autoimmune etiology behind the dysautonomia/neuropathy and yes, it is VERY expensive. i too was given a large dose; this is often the case for autoimmune etiologies, at least initially. the plan for me was 5 days of 8 hour treatments monthly for 6 months. if i was going to benefit we expected to probably see something after the second or third 5-day treatment. i was hospitalized for the first cycle of treatments; the next treatment i had with nurses at my apartment.

unfortunately we had to stop the treatments for me after the second 5-day cycle because my liver enzymes went through the roof. i hadn't/haven't had any benefits from the treatment and chances are we won't restart it b/c of the risk to my liver and small chance that it would be beneficial at this point.

during the treatments the only real side effects i had were headaches, which are VERY common, as well as crazier BP changes (high & low) than my norm. pre-medications (steriods, benedryl & tylenol) helped the headaches a lot though.

hope you have success with the treatments...feel free to let me know if you have any other questions.

:) melissa

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