IVIG increased, info PLEASE

[Guest guest]

We just got back from a short trip and had a message that Ben's doctor

was agreeing to doubling his amount of IVIG due to being unable to find

a Gamimune N 5 grams. He has been taking 10 grams for many years and has

increased in weight. He now weighs about 79 to 80 pounds. The pharmacy

has tried to find a 5 gram but was not able. They called the doctor and

he

said to try Ben at 20 grams. This seems like such a big increase to us.

Do any

of you know how much is prescribed by weight? Is this an unusual amount?

Just a little nervous here. We will need to start the IV earlier. I wish

I had not

missed the call. His IV is Friday. Any info from your experience would

help

me to feel I know what others are doing. Thanks.

Jan

[Guest guest]

Hi,

Hannah was on 10g for 2 years. She started in 1999 when she was

52lbs, she is now 56lbs (oooohhh, such a wonderful weight gain in 2

years!) and the doc just upped her to 15g for 1 month, saw no

improvement, so he increased again to 20g. (gammimmune n). the

company i deal with (home care nurse from Infusion Solutions) has a

contract regarding gammimmune N and never has issues with shortages.

They also get it in 5g sizes. I had been wondering myself what the

recommended dosage was for her weight. After all, she only gained 4

lbs but went up to 20g. If you get any info, please forward it to me

also so we can both get our questions answered.

Thanks

(Hannah 10yrs, CVID, JRA)

[Guest guest]

Hi Jan, Lucas has been on 10gms since he was 4 and weighed less than 40 lbs.

I think 37 lbs when we started. There is a normal dose range by weight with

paramters. Should be on the med insert. BARBIE

[Guest guest]

Hi Jan, Lucas has been on 10gms since he was 4 and weighed less than 40 lbs.

I think 37 lbs when we started. There is a normal dose range by weight with

paramters. Should be on the med insert. BARBIE

[Guest guest]

Hi Barbie, do you get to see a med insert? Our med comes with the home

health nurse and does not include the packaging. I feel better knowing some

others have taken that much. Thanks. He did fine during the infusion. He is

off to drive go carts with Dad as he is now tall enough. He had 20 grams of

10% Gamimune N and the maximum rate this time was 60. That is the fastest

his rate has ever been. I save med inserts on medicenes so I can refer to them.

Jan

MOTHER1544@... wrote:

> Hi Jan, Lucas has been on 10gms since he was 4 and weighed less than 40 lbs.

> I think 37 lbs when we started. There is a normal dose range by weight with

> paramters. Should be on the med insert. BARBIE

>

>

[Guest guest]

Most immunologists go by the 400 mg/kg dose. 400 milligrams of IVIG per

kilogram of body weight. After that's

established and if infections continue then they might start to look at trough

levels and decide if the standard dose

isn't lasting long enough.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

http://home.att.net/~maceyh/

[Guest guest]

Jan, sorry this didn't get there in time for the infusion -- I'm behind

because of the conference! The normal dose range (the one used to

generally estimate how much IVIG is given when beginning, and continues

to be referred to as the child grows, as long as the levels remain in

the appropriate range): 400mg/kg body weight. So, if Ben is 80lb,

that equals 36.3kg.

36.3kg x 400mg/kg = 14520 mg = 14.5g .... so he's just 5.5g above his

'appropriate' dose, based on weight... or a different way of looking at

it, he's getting 550mg/kg, instead of 400.... this is actually just

about the same dose I get every month (500-ish mg/kg), because that's

what I require to keep my troughs in the normal range -- they believe

that I either hypermetabolize it, or I lose it through my GI tract

slightly each month. I do fine with the 500mg/kg dose, if that makes

you feel better. :-)

Going up to 20g, as a temporary thing, will probably just raise his

levels to the high level of normal, or maybe just slightly above. If it

were continued that way, and he remains at the same weight, his levels

will probably be slightly above normal on a regular basis. Probably if

you continue to keep the rate as slow as you did this time, he won't

have problems. People take mega doses of IVIG for autoimmune diseases

(like in the range of 2000mg/kg body weight, so 5x what we get!). Those

people have a higher incidence of post-infusion headaches and achiness,

and a higher incidence of aseptic meningitis, but that's a great deal

higher than what Ben's getting, and I doubt that his current dose will

result in any major problems, since he usually does fine with the 10g

dose.

This is a general point I thought was interesting (from the conference):

One thing two different docs said this weekend at the IDF conference is

that if you do well with troughs at the low end of the normal range,

going higher doesn't provide additional benefits. For example, say

normal for someone's age was IgG level of 600-1200.... if the child is

doing well at a trough level of 630, adding extra IVIG to take them up

to 1200 is not going to decrease the number of infections even more. Of

course, if the child still isn't doing well at 600, perhaps a slight

increase will help, but in general, they said that adding more IVIG has

diminishing returns (of course, I should interject here that

anecdotally, I know people whose personal experiences contradict that,

but I guess that's just the natural variation of these things.... the

two docs who said it were speaking in more general terms, basically just

letting people know that if you continue to get sick at an appropriate

dose of IVIG, adding more and more is not likely to help, and in fact,

they said that if it doesn't make a significant difference in quality of

life and reduction of infections, perhaps the low IgG wasn't really the

culprit for the infections in the first place, and you need to look for

other explanations for why this person keeps getting sick). Being at

20g/month temporarily is not a bad thing.... it will just boost Ben up a

bit for a little while. If they can find a 5g bottle and go to 15g for

a while, he will probably do just as well, infection-wise, and that

extra 5g can go to someone else while the supplies are still a bit short

nationwide, but 20g is probably better for him right now than 10g, if

they cannot find the 5g bottles yet, if I remember correctly that you

said he was experiencing more frequent infections lately, likely because

the dose was too low for his current weight. Of course, when he grows

and gains more weight, 20g will someday be indicated, but right now it

doesn't sound like it'll provide any additional benefits for Ben over

15g, if you can find the right combo to give him 15g. In any case, I

am glad that the higher dose infusion went well, and that Ben seems to

have tolerated it well! I'm sure that's a bit of a relief not to have

to worry any more!

>

> MOTHER1544@... wrote:

There is a normal dose range by weight with

> > paramters. Should be on the med insert. BARBIE

[Guest guest]

Jan, sorry this didn't get there in time for the infusion -- I'm behind

because of the conference! The normal dose range (the one used to

generally estimate how much IVIG is given when beginning, and continues

to be referred to as the child grows, as long as the levels remain in

the appropriate range): 400mg/kg body weight. So, if Ben is 80lb,

that equals 36.3kg.

36.3kg x 400mg/kg = 14520 mg = 14.5g .... so he's just 5.5g above his

'appropriate' dose, based on weight... or a different way of looking at

it, he's getting 550mg/kg, instead of 400.... this is actually just

about the same dose I get every month (500-ish mg/kg), because that's

what I require to keep my troughs in the normal range -- they believe

that I either hypermetabolize it, or I lose it through my GI tract

slightly each month. I do fine with the 500mg/kg dose, if that makes

you feel better. :-)

Going up to 20g, as a temporary thing, will probably just raise his

levels to the high level of normal, or maybe just slightly above. If it

were continued that way, and he remains at the same weight, his levels

will probably be slightly above normal on a regular basis. Probably if

you continue to keep the rate as slow as you did this time, he won't

have problems. People take mega doses of IVIG for autoimmune diseases

(like in the range of 2000mg/kg body weight, so 5x what we get!). Those

people have a higher incidence of post-infusion headaches and achiness,

and a higher incidence of aseptic meningitis, but that's a great deal

higher than what Ben's getting, and I doubt that his current dose will

result in any major problems, since he usually does fine with the 10g

dose.

This is a general point I thought was interesting (from the conference):

One thing two different docs said this weekend at the IDF conference is

that if you do well with troughs at the low end of the normal range,

going higher doesn't provide additional benefits. For example, say

normal for someone's age was IgG level of 600-1200.... if the child is

doing well at a trough level of 630, adding extra IVIG to take them up

to 1200 is not going to decrease the number of infections even more. Of

course, if the child still isn't doing well at 600, perhaps a slight

increase will help, but in general, they said that adding more IVIG has

diminishing returns (of course, I should interject here that

anecdotally, I know people whose personal experiences contradict that,

but I guess that's just the natural variation of these things.... the

two docs who said it were speaking in more general terms, basically just

letting people know that if you continue to get sick at an appropriate

dose of IVIG, adding more and more is not likely to help, and in fact,

they said that if it doesn't make a significant difference in quality of

life and reduction of infections, perhaps the low IgG wasn't really the

culprit for the infections in the first place, and you need to look for

other explanations for why this person keeps getting sick). Being at

20g/month temporarily is not a bad thing.... it will just boost Ben up a

bit for a little while. If they can find a 5g bottle and go to 15g for

a while, he will probably do just as well, infection-wise, and that

extra 5g can go to someone else while the supplies are still a bit short

nationwide, but 20g is probably better for him right now than 10g, if

they cannot find the 5g bottles yet, if I remember correctly that you

said he was experiencing more frequent infections lately, likely because

the dose was too low for his current weight. Of course, when he grows

and gains more weight, 20g will someday be indicated, but right now it

doesn't sound like it'll provide any additional benefits for Ben over

15g, if you can find the right combo to give him 15g. In any case, I

am glad that the higher dose infusion went well, and that Ben seems to

have tolerated it well! I'm sure that's a bit of a relief not to have

to worry any more!

>

> MOTHER1544@... wrote:

There is a normal dose range by weight with

> > paramters. Should be on the med insert. BARBIE

[Guest guest]

Jan, sorry this didn't get there in time for the infusion -- I'm behind

because of the conference! The normal dose range (the one used to

generally estimate how much IVIG is given when beginning, and continues

to be referred to as the child grows, as long as the levels remain in

the appropriate range): 400mg/kg body weight. So, if Ben is 80lb,

that equals 36.3kg.

36.3kg x 400mg/kg = 14520 mg = 14.5g .... so he's just 5.5g above his

'appropriate' dose, based on weight... or a different way of looking at

it, he's getting 550mg/kg, instead of 400.... this is actually just

about the same dose I get every month (500-ish mg/kg), because that's

what I require to keep my troughs in the normal range -- they believe

that I either hypermetabolize it, or I lose it through my GI tract

slightly each month. I do fine with the 500mg/kg dose, if that makes

you feel better. :-)

Going up to 20g, as a temporary thing, will probably just raise his

levels to the high level of normal, or maybe just slightly above. If it

were continued that way, and he remains at the same weight, his levels

will probably be slightly above normal on a regular basis. Probably if

you continue to keep the rate as slow as you did this time, he won't

have problems. People take mega doses of IVIG for autoimmune diseases

(like in the range of 2000mg/kg body weight, so 5x what we get!). Those

people have a higher incidence of post-infusion headaches and achiness,

and a higher incidence of aseptic meningitis, but that's a great deal

higher than what Ben's getting, and I doubt that his current dose will

result in any major problems, since he usually does fine with the 10g

dose.

This is a general point I thought was interesting (from the conference):

One thing two different docs said this weekend at the IDF conference is

that if you do well with troughs at the low end of the normal range,

going higher doesn't provide additional benefits. For example, say

normal for someone's age was IgG level of 600-1200.... if the child is

doing well at a trough level of 630, adding extra IVIG to take them up

to 1200 is not going to decrease the number of infections even more. Of

course, if the child still isn't doing well at 600, perhaps a slight

increase will help, but in general, they said that adding more IVIG has

diminishing returns (of course, I should interject here that

anecdotally, I know people whose personal experiences contradict that,

but I guess that's just the natural variation of these things.... the

two docs who said it were speaking in more general terms, basically just

letting people know that if you continue to get sick at an appropriate

dose of IVIG, adding more and more is not likely to help, and in fact,

they said that if it doesn't make a significant difference in quality of

life and reduction of infections, perhaps the low IgG wasn't really the

culprit for the infections in the first place, and you need to look for

other explanations for why this person keeps getting sick). Being at

20g/month temporarily is not a bad thing.... it will just boost Ben up a

bit for a little while. If they can find a 5g bottle and go to 15g for

a while, he will probably do just as well, infection-wise, and that

extra 5g can go to someone else while the supplies are still a bit short

nationwide, but 20g is probably better for him right now than 10g, if

they cannot find the 5g bottles yet, if I remember correctly that you

said he was experiencing more frequent infections lately, likely because

the dose was too low for his current weight. Of course, when he grows

and gains more weight, 20g will someday be indicated, but right now it

doesn't sound like it'll provide any additional benefits for Ben over

15g, if you can find the right combo to give him 15g. In any case, I

am glad that the higher dose infusion went well, and that Ben seems to

have tolerated it well! I'm sure that's a bit of a relief not to have

to worry any more!

>

> MOTHER1544@... wrote:

There is a normal dose range by weight with

> > paramters. Should be on the med insert. BARBIE

[Guest guest]

Thank you so much, . As always, your reply was full of info. I am a bit

confused now if Ben will be staying on the 20 gr. dose. When I called the

pharmacy on Friday during the infusion, they said that they had just received a

new shipment yesterday, that had 5 gr. included but earlier in the week when

they talked to

Dr. Wasserman (before the shipment) he had said to go ahead and try Ben at

20 gr. I will probably call the Dr.'s office later in the month and see what his

notes were about the dose.

Yesterday I let the children have Burger King after picking up at

Vacation Bible School at noon. Ben ordered a triple cheeseburger and a small

coke. Part way into the burger, he quit eating and showed me that some of the

meat was pink. I have always taught him to check the burgers before eating,

but looks like he missed it this time. Anyway, I gave BK back the burger and

they made him a new one (fully cooked), but he only ate a few bites. Well, we

were a little worried, but reassured him. He awoke early today with a stomach

ache and had 3 loose stools at the morning and one vomiting session. So far,

this afternoon he has kept down and asked for Gatorade and ate 4 crackers.

I know he is quite worried as I have taught him to eat only throughly cooked

meat.We have explained that it is not good to eat undercooked hamburger, but

it doesn't always cause illness and that Dad has eaten undercooked hamburgers

before and been just fine. I hate that we missed it and I am unhappy with

Burger King. I put a call

into the Ped. and they said to push fluids and limit diet to bland and go

slowly.

Also, to watch for blood or lots of mucus in stools. I feel better now that he

is

doing better this afternoon. I hate this kind of thing. He did fine with the

increased IVIG and will probably do fine with this too. Thanks for letting me

share.

Ursula, thanks for your helpful info. How is Macey's tooth?

How are Mark and ? Tina, how is doing?

Did anyone learn about IgG subgroups at the meeting? I am still looking for info

on subgroup 1.

Hope all the the sick ones are getting better.

Jan

[Guest guest]

Thank you so much, . As always, your reply was full of info. I am a bit

confused now if Ben will be staying on the 20 gr. dose. When I called the

pharmacy on Friday during the infusion, they said that they had just received a

new shipment yesterday, that had 5 gr. included but earlier in the week when

they talked to

Dr. Wasserman (before the shipment) he had said to go ahead and try Ben at

20 gr. I will probably call the Dr.'s office later in the month and see what his

notes were about the dose.

Yesterday I let the children have Burger King after picking up at

Vacation Bible School at noon. Ben ordered a triple cheeseburger and a small

coke. Part way into the burger, he quit eating and showed me that some of the

meat was pink. I have always taught him to check the burgers before eating,

but looks like he missed it this time. Anyway, I gave BK back the burger and

they made him a new one (fully cooked), but he only ate a few bites. Well, we

were a little worried, but reassured him. He awoke early today with a stomach

ache and had 3 loose stools at the morning and one vomiting session. So far,

this afternoon he has kept down and asked for Gatorade and ate 4 crackers.

I know he is quite worried as I have taught him to eat only throughly cooked

meat.We have explained that it is not good to eat undercooked hamburger, but

it doesn't always cause illness and that Dad has eaten undercooked hamburgers

before and been just fine. I hate that we missed it and I am unhappy with

Burger King. I put a call

into the Ped. and they said to push fluids and limit diet to bland and go

slowly.

Also, to watch for blood or lots of mucus in stools. I feel better now that he

is

doing better this afternoon. I hate this kind of thing. He did fine with the

increased IVIG and will probably do fine with this too. Thanks for letting me

share.

Ursula, thanks for your helpful info. How is Macey's tooth?

How are Mark and ? Tina, how is doing?

Did anyone learn about IgG subgroups at the meeting? I am still looking for info

on subgroup 1.

Hope all the the sick ones are getting better.

Jan