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Re: is subQ as effective as IVIG?

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Amy,

A couple of things occurred to me when I read your post. My Rebekah took

almost a year to recover to reasonable health after starting IVIG every 3

weeks through a port. She was so run down from countless infections that she

did not recover quickly. The other thought was about sinus infections. Our

ped told us that sinus infections are hard to treat and cure because the

antibiotic has trouble getting there and unless you keep the sinus passages

open, it is easy for a tiny amount of bacteria to get trapped there and for

a repeat infection to start. Are you using any nasal steroid spray on your

son? That really helped us defeat our last sinus infection.

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

is subQ as effective as IVIG?

Nick has had 4 infusions of SubQ IG. He really isn't getting any better and

actually he has been more severely sick since starting the subQ than he was

before it.

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from Dale, Mom to Katy, CVID, age 20

Amy, I've got a few thoughts to share. First, IVIG or SCIG, doesn't

really " work " quickly. I think of it as coming home from vacation when

the weather is around zero and you turn the furnace on. Yes, the

furnace is now running at full-speed, but it will take a while to get

the house warm because every piece of furniture is cold, every closet is

cold, every space is cold. It will take hours to get warm. With IVIG

or SCIG you are adding antibodies, but they are getting eaten up quickly

by the germs in the body. So, it takes many, many infusions before the

body is at a comfortable level where everything is staying germ free.

Secondly, IgA is the primary protector of the sinuses and no IgG

replacement is going to make a substantial dent in a sinus infection. I

feel that the only thing that IVIG or SCIG does for a sinus infection is

to help prevent it from starting by helping the body get healthier in

general so that minor infections can be treated with antibiotics and not

turn into monster infections. Once you've got a monster infection in

the sinuses -- I don't believe you should be expecting IgG replacement

to do a lot.

However, on the flip side -- when a PID patient is being bombarded by an

infection that is out of control, sometimes the treatment is to saturate

him/her with IgG in order to help keep the infection from going systemic

(sepsis). So, your immunologist may recommend a round of IVIG in

order to boost his system along.

Finally, is SCIG just as effective as IVIG? In all the studies that

I've read, SCIG is slightly more protective because you don't see a drop

in levels once that protective level is reached. With IVIG you see the

protective level fall throughout the month or 3 weeks, with SCIG you see

a stable protective level at all times. But that is only after the

level has been reached. I'm not sure when that level is reached if you

are just beginning SCIG.

Hope some of these thoughts help.

In His service,

Dale

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Pam,

Thanks for the reply. Nick is using a abx nasal spray along with saline nasal

spray several times a day. The immuno's office called and I really didn't

understand what she said.. something about positive for organisms.. but that it

was okay because he was still on the abx. We were told to finish off the abx

and call them at the end of the week if he wasn't better.

Amy, mom to:

, 20 months old. CVID, MSPI, GERD, Asthma.. on Neocate, prevacid,

claritin, flovent, xopenex, and IVIG sub Q every two weeks (Carimune NF)

RE: is subQ as effective as IVIG?

Amy,

A couple of things occurred to me when I read your post. My Rebekah took

almost a year to recover to reasonable health after starting IVIG every 3

weeks through a port. She was so run down from countless infections that she

did not recover quickly. The other thought was about sinus infections. Our

ped told us that sinus infections are hard to treat and cure because the

antibiotic has trouble getting there and unless you keep the sinus passages

open, it is easy for a tiny amount of bacteria to get trapped there and for

a repeat infection to start. Are you using any nasal steroid spray on your

son? That really helped us defeat our last sinus infection.

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 5, and Leah, 3

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Dale,

Thank you so much. You really have a way of putting things into perspective. I

appreciate you taking the time to explain it like that, it really make a lot

more sense. I see that we need to give it a lot longer than what we have been.

Amy, mom to:

, 20 months old. CVID, MSPI, GERD, Asthma.. on Neocate, prevacid,

claritin, flovent, xopenex, and IVIG sub Q every two weeks (Carimune NF)

Re: is subQ as effective as IVIG?

from Dale, Mom to Katy, CVID, age 20

Amy, I've got a few thoughts to share. First, IVIG or SCIG, doesn't

really " work " quickly. I think of it as coming home from vacation when

the weather is around zero and you turn the furnace on. Yes, the

furnace is now running at full-speed, but it will take a while to get

the house warm because every piece of furniture is cold, every closet is

cold, every space is cold. It will take hours to get warm. With IVIG

or SCIG you are adding antibodies, but they are getting eaten up quickly

by the germs in the body. So, it takes many, many infusions before the

body is at a comfortable level where everything is staying germ free.

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Care - PID patients are a whole different beast. Don't ever let your doc

compare your PID child to another immune system functioning child. It's

like comparing apples to oranges.

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

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