Re: reaction to ivig

[Guest guest]

Personally I have never heard of them giving IVIG without first

giving Solumedrol or some sort of hydrocortisone and Benadryl and

tylenol. My kids all reacted at their first dose and slowly became

used to the infusion all except one who still reacts but we just deal

with it as we are much worse off without it. Some kids just cant

tolerate it and can do well enough without it.

I hope your next infusion goes much better.

[Guest guest]

Hi Rosy,

When I used to get gamma through IVIG (now I get it through subcutaneous route),

I used to get reactions. What kind of a reaction did she get? Did it go into

anaphylaxis?

Typically, with gamma you can get 'normal' reactions to the IVIG - chills,

muscle aches - usually this means you have an active infection and it's actually

being fought by the gamma - and those have been tolerable reactions for me. The

anaphylaxis is obviously NOT tolerable at all and leads to difficulty breathing,

high blood pressure, and ultimately death if not treated by steroids and

Benadryl. My doc used to give me Benadryl by mouth prior to starting infusions

and that helped TONS! I would just sleep through the infusions. Slowing the rate

helps as well. Another thought is that many people who do get an anaphylactic

reaction to the gamma are getting it b/c they make anti-IgA antibodies. I, for

one, have little IgA and I have antibodies against IgA. If this is the case (and

they can easily test for it, and, even if they don't, they should assume that

she has anti-IgA antibodies IF she has low IgA AND has these reactions), there

are certain 'types' of gammaglobulin that are better b/c they have negligible

IgA in them. Gammagard is one and, I believe, Gammaimmune, but I'm not sure

about the last one. Lastly, you may want to start talking to the doctors about

SUBQGAMMA (that's when you get the same gammaglobulin through a subcutaneous

route). There are virtually NO side effect by doing it the subq route. The

downer is that you have to do it more frequently (1-2x a week) but once they see

she has no reactions, you will be able to do it at home. And, it means more

frequent sticks b/c of having to do it once or twice a week.

I hope that helps. Feel free to ask any more questions, put ANNE on the sibject

line in case I'm scanning e-mail b/c of time. I'm so sorry that you are dealing

with this. I can only imagine how difficult it is with what Rosy already has to

cope with.

Love,

Anne R

[Guest guest]

Hi Rosy,

When I used to get gamma through IVIG (now I get it through subcutaneous route),

I used to get reactions. What kind of a reaction did she get? Did it go into

anaphylaxis?

Typically, with gamma you can get 'normal' reactions to the IVIG - chills,

muscle aches - usually this means you have an active infection and it's actually

being fought by the gamma - and those have been tolerable reactions for me. The

anaphylaxis is obviously NOT tolerable at all and leads to difficulty breathing,

high blood pressure, and ultimately death if not treated by steroids and

Benadryl. My doc used to give me Benadryl by mouth prior to starting infusions

and that helped TONS! I would just sleep through the infusions. Slowing the rate

helps as well. Another thought is that many people who do get an anaphylactic

reaction to the gamma are getting it b/c they make anti-IgA antibodies. I, for

one, have little IgA and I have antibodies against IgA. If this is the case (and

they can easily test for it, and, even if they don't, they should assume that

she has anti-IgA antibodies IF she has low IgA AND has these reactions), there

are certain 'types' of gammaglobulin that are better b/c they have negligible

IgA in them. Gammagard is one and, I believe, Gammaimmune, but I'm not sure

about the last one. Lastly, you may want to start talking to the doctors about

SUBQGAMMA (that's when you get the same gammaglobulin through a subcutaneous

route). There are virtually NO side effect by doing it the subq route. The

downer is that you have to do it more frequently (1-2x a week) but once they see

she has no reactions, you will be able to do it at home. And, it means more

frequent sticks b/c of having to do it once or twice a week.

I hope that helps. Feel free to ask any more questions, put ANNE on the sibject

line in case I'm scanning e-mail b/c of time. I'm so sorry that you are dealing

with this. I can only imagine how difficult it is with what Rosy already has to

cope with.

Love,

Anne R

[Guest guest]

Hi Rosie: I have 2 boys: Zach (12 yrs) and Sam (7 yrs) and both have been getting IVIG infusions for about 5 years now. They get a very high dose every 3-4 weeks (approximately 4-5x the typical immune deficiency dose). The first time Sammy had it, we pre-medicated with benadryl, hydrocortisone and Tylenol. he did well initially but as he got into the 4-5th hour of the infusion and the rate was higher he had a terrible neurological reaction (fever=104, extremely floppy, lethargic, severely low blood pressures, tremors). we then went to a lower rate...he still did not do well. we then went to a protocol of giving a fluid bolus before the infusions, pre medicating with benadryl, solumedrol instead of hydrocortisone (much more potent) and IV Ketorolac (rather than Tylenol - again more potent). We give the meds 15 mins pre start of infusion and then every 6 hours through the infusion. even so it takes 96 hours for him to get his dose and he has to be admitted. But it is worth it. Zach does much the same and we have the same protocol. Granted the boys have a larger dose but the point is that we give it very slow and lots of medication before and during. WE use the most diluted solution you can use (5%). The max rate Sam can tolerate is 8 ml/hour and for zach it is 15 ml/hr. Don't be too discouraged. Lots of kids have trouble with IVIG but usually the doctors can come up with a protocol that will work....it may take time. I think it took us a few admissions to get a good plan that worked for the boys. Annewww.caringbridge.org/wi/zachsam _______________Max had her first IVIG infusion yesterday. Better to say we tried. In the beginning the flow rate is very very slow ( first 15 minutes). This is to make sure the kids tolerate the medication. As soon as they turned up the flow rate, Max had a reaction. The infusion ws stopped. Benadryl and hydrocortison were administered thru the IV, saline, and 2 1/2 hours later she was stable enough for us to go home. As anyone experienced that?We are scheduled to try again in 10 days time. This time they plan to use slow flow the entire time.thanks,rosy, mom to max, 5

[Guest guest]

Hi Rosie: I have 2 boys: Zach (12 yrs) and Sam (7 yrs) and both have been getting IVIG infusions for about 5 years now. They get a very high dose every 3-4 weeks (approximately 4-5x the typical immune deficiency dose). The first time Sammy had it, we pre-medicated with benadryl, hydrocortisone and Tylenol. he did well initially but as he got into the 4-5th hour of the infusion and the rate was higher he had a terrible neurological reaction (fever=104, extremely floppy, lethargic, severely low blood pressures, tremors). we then went to a lower rate...he still did not do well. we then went to a protocol of giving a fluid bolus before the infusions, pre medicating with benadryl, solumedrol instead of hydrocortisone (much more potent) and IV Ketorolac (rather than Tylenol - again more potent). We give the meds 15 mins pre start of infusion and then every 6 hours through the infusion. even so it takes 96 hours for him to get his dose and he has to be admitted. But it is worth it. Zach does much the same and we have the same protocol. Granted the boys have a larger dose but the point is that we give it very slow and lots of medication before and during. WE use the most diluted solution you can use (5%). The max rate Sam can tolerate is 8 ml/hour and for zach it is 15 ml/hr. Don't be too discouraged. Lots of kids have trouble with IVIG but usually the doctors can come up with a protocol that will work....it may take time. I think it took us a few admissions to get a good plan that worked for the boys. Annewww.caringbridge.org/wi/zachsam _______________Max had her first IVIG infusion yesterday. Better to say we tried. In the beginning the flow rate is very very slow ( first 15 minutes). This is to make sure the kids tolerate the medication. As soon as they turned up the flow rate, Max had a reaction. The infusion ws stopped. Benadryl and hydrocortison were administered thru the IV, saline, and 2 1/2 hours later she was stable enough for us to go home. As anyone experienced that?We are scheduled to try again in 10 days time. This time they plan to use slow flow the entire time.thanks,rosy, mom to max, 5