Repetitive HD IVIG

[Debbie1]

dd13 is five months post IVIG #2. She is doing much better when she is well - about 80% improved - but still slips significantly when she is sick. She has battled cold after cold this winter and strep is rampant at her school. Our doctor feels that a third IVIG will help her get into the 90% improved range and help her not slip so much when she is sick. She is not immune deficient, but did fail her strep pneumo titers when tested. We are confident that we have ruled out lyme and she does not currently have a mycoplasma infection.

 

I am nervous about repetitive HD IVIG. Can anyone tell me what the risks are? I have heard of increased risk of allergic reaction. Does anyone know how that is dealt with? Any other risks I should be aware of besides the fact that it is a donor blood product? How often is it safe to repeat at a high dose (1.5g/kg)?

 

I have also heard that HD IVIG is used in other autoimmune disorders. Can anyone tell me what those disorders are, the dose used and the frequency of infusions?

[peglem]

dd13 is five months post IVIG #2. She is doing much better when she is well - about 80% improved - but still slips significantly when she is sick. She has battled cold after cold this winter and strep is rampant at her school. Our doctor feels that a third IVIG will help her get into the 90% improved range and help her not slip so much when she is sick. She is not immune deficient, but did fail her strep pneumo titers when tested. We are confident that we have ruled out lyme and she does not currently have a mycoplasma infection.

 

I am nervous about repetitive HD IVIG. Can anyone tell me what the risks are? I have heard of increased risk of allergic reaction. Does anyone know how that is dealt with? Any other risks I should be aware of besides the fact that it is a donor blood product? How often is it safe to repeat at a high dose (1.5g/kg)?

 

I have also heard that HD IVIG is used in other autoimmune disorders. Can anyone tell me what those disorders are, the dose used and the frequency of infusions?

I can only tell you our experience. My daughter has been doing 1.5mg/kg every 4 weeks since May 2010. She does have immune deficiency and IgA is very low. We use gammagard because it has low IgA (reduce risk of autoimmune reaction to IgA). She has always done very well with it. In November, because of scheduling difficulties, we did her infusion 3 weeks after the last one, instead of 4, and I saw better improvement than in the past and did december's just a few days more than 3 weeks, same difference in improvement. I'm going to check w/ immuno and see if we can switch to every 3 weeks. My feeling, from our experience, is that it is quite safe.

[JAG10]

dd13 is five months post IVIG #2. She is doing much better when she is well - about 80% improved - but still slips significantly when she is sick. She has battled cold after cold this winter and strep is rampant at her school. Our doctor feels that a third IVIG will help her get into the 90% improved range and help her not slip so much when she is sick. She is not immune deficient, but did fail her strep pneumo titers when tested. We are confident that we have ruled out lyme and she does not currently have a mycoplasma infection.

 

I am nervous about repetitive HD IVIG. Can anyone tell me what the risks are? I have heard of increased risk of allergic reaction. Does anyone know how that is dealt with? Any other risks I should be aware of besides the fact that it is a donor blood product? How often is it safe to repeat at a high dose (1.5g/kg)?

 

I have also heard that HD IVIG is used in other autoimmune disorders. Can anyone tell me what those disorders are, the dose used and the frequency of infusions?

I can only tell you our experience. My daughter has been doing 1.5mg/kg every 4 weeks since May 2010. She does have immune deficiency and IgA is very low. We use gammagard because it has low IgA (reduce risk of autoimmune reaction to IgA). She has always done very well with it. In November, because of scheduling difficulties, we did her infusion 3 weeks after the last one, instead of 4, and I saw better improvement than in the past and did december's just a few days more than 3 weeks, same difference in improvement. I'm going to check w/ immuno and see if we can switch to every 3 weeks. My feeling, from our experience, is that it is quite safe.

 

 

Peg- I know there are other parents on here who reported their children received IVIG every 21 days and said that improvements diminished when they tried to extend to 28 days, but I'm not sure exactly who, maybe nevergiveup or coco?

[melanie]

Me

 

danny does every 21 days but we do 1g per kilo

 

melanie