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Re: Re: trough levels

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Great Points.

BARBIE  

From: kristinz4 <kristin-smith@...>

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>Sent: Saturday, September 3, 2011 6:09 AM

>Subject: Re: trough levels

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>Keep in mind that there have never been randomized clinical studies to

determine the optimal trough level in patients getting IVIG. The clinical

picture should be a significant factor in determining dose. It actually says

something to this effect in the Gammagard package insert. There was a

comparative analysis of some small studies on trough levels where there is some

evidence pointing to reduced episodes of pneumonia in patients with a trough

over 1000. I find it interesting that some people can stay well with a trough of

500 and some people seem to need much more. My son Conner is a prime example,

before his bone marrow transplant he seemed to need a much higher trough, over

1000 to stay pretty well. Without IVIG his IgG would run around 250. Since BMT

his levels are running around 600 without IVIG and he never gets sick any more

(he had chronic sinusitis before). I suspect that it depends on how much of the

immune system is affected. Before BMT he

had multiple issues with his immune system, since BMT he pretty much only has a

complement deficiency and slightly low IgG, but he responds to all vaccines now.

He is the healthiest person in our house and has the lowest IgG at the moment.

Patients with immune deficiencies certainly are unique and need to be treated as

such. I would encourage you to document infections and the need for antibiotics

so you can help your doctor see if a dosing adjustment should be considered. I

also wonder about switching brands, I don't believe there is any proof in one

product being more beneficial over another, but it sure seemed to be the case

for us. Keep asking questions. It took us 5 different immunologists in three

states to find someone to accurately diagnose and treat our family!

>

> (NEMO carrier)

>Mom to Hayden (17-unknown PID)

>Evan (17-unknown PID)

>Conner (17-NEMO; bone marrow transplant 8/17/07)

>Kelsey (15-unknown PID and NEMO carrier)

>Wife to (unknown PID)

>www.caringbridge.org/visit/smithkids

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