Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 There are a number but they are considered " off label " use. We have used Gamunex 10% for 3 years sub-q and I know a lot of others do as well. Most of the IVIG meds can be used sub-q and are over in Europe where sub-q has been in year for decades. Its only " new " to the US so Dr's may not be as open about using something other then " officially approved " products. We were never given the choice really, since my daughter tends to be more sensitive they said a higher concentration products would be a bad idea for her. We've been happy with the gamunex:) ________________________________ From: " mindy@... " <mindy@...> Sent: Wed, May 11, 2011 8:11:08 AM Subject: Re: IVIG to subq Vivaglobin is no longer available in our area. Is there another subcutaneous product available? The doctor wanted to continue Hizentra for three months and see if his migraines were better with the premed. He has been sicker on Hizentra than Viva (still on antibiotics, two months now; changed again yesterday). Mindy, mom to , 9, CVID > Isn't the Hizentra a more concentrated product? Wouldn't it be better to > switch > to a lower concentration product? > > > > > > > ________________________________ > From: " mindy@... " <mindy@...> > > Sent: Wed, May 11, 2011 7:44:30 AM > Subject: Re: IVIG to subq > > had very few side effects with Vivaglobin SubQ (mostly local site > reactions), but has been on Hizentra for 2 months and requires premeds > with Naproxen and prelone 20 mg to prevent migraine (already on max > antihistamines). He did not require prelone with viva. His side effects > with one dose of IVIG was headache and malaise for over a week. He does > have significant migraine problems this spring, so it is probably not > totally due to the Hizentra... > > I think that you will have much better luck with subQ. > > Mindy, mom to , 9, CVID (I may have told you this already > >> We just can't seem to control the IVIG side effects. My son had aseptic >> meningitis with the first infusion. They switched products, slowed down >> the rate to a max of 25 ml/hr and premeditated with IV fluids prior to >> the >> infusion, benadryl and ibuprofen. He still gets a bad headache with >> vomiting at some point after the infusion (1-4 days post). Continuous >> ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't >> fun. We even tried IV steroids this time and he still got a headache. >> >> So we're starting on subq in a week. Please tell me this is much more >> tolerable! Do you still premeditate for subq? >> >> >> 7yo CVID >> >> > > > > > ------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole > responsibility of the poster and should not be taken as professional > advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 thanks, . This antibx seems to be working better, so we are hoping this will take care of his skin infection. We are also weaning his steroid premed. If this doesn't work, I will ask for Gamunex. Thanks! Mindy, mom of , 9 > There are a number but they are considered " off label " use. We have used > Gamunex > 10% for 3 years sub-q and I know a lot of others do as well. Most of the > IVIG > meds can be used sub-q and are over in Europe where sub-q has been in year > for > decades. Its only " new " to the US so Dr's may not be as open about using > something other then " officially approved " products. We were never given > the > choice really, since my daughter tends to be more sensitive they said a > higher > concentration products would be a bad idea for her. We've been happy with > the > gamunex:) > > > > > > > ________________________________ > From: " mindy@... " <mindy@...> > > Sent: Wed, May 11, 2011 8:11:08 AM > Subject: Re: IVIG to subq > > Vivaglobin is no longer available in our area. Is there another > subcutaneous product available? The doctor wanted to continue Hizentra > for three months and see if his migraines were better with the premed. He > has been sicker on Hizentra than Viva (still on antibiotics, two months > now; changed again yesterday). > > Mindy, mom to , 9, CVID > >> Isn't the Hizentra a more concentrated product? Wouldn't it be better to >> switch >> to a lower concentration product? >> >> >> >> >> >> >> ________________________________ >> From: " mindy@... " <mindy@...> >> >> Sent: Wed, May 11, 2011 7:44:30 AM >> Subject: Re: IVIG to subq >> >> had very few side effects with Vivaglobin SubQ (mostly local site >> reactions), but has been on Hizentra for 2 months and requires premeds >> with Naproxen and prelone 20 mg to prevent migraine (already on max >> antihistamines). He did not require prelone with viva. His side >> effects >> with one dose of IVIG was headache and malaise for over a week. He does >> have significant migraine problems this spring, so it is probably not >> totally due to the Hizentra... >> >> I think that you will have much better luck with subQ. >> >> Mindy, mom to , 9, CVID (I may have told you this already >> >>> We just can't seem to control the IVIG side effects. My son had >>> aseptic >>> meningitis with the first infusion. They switched products, slowed >>> down >>> the rate to a max of 25 ml/hr and premeditated with IV fluids prior to >>> the >>> infusion, benadryl and ibuprofen. He still gets a bad headache with >>> vomiting at some point after the infusion (1-4 days post). Continuous >>> ibuprofen for 3 days helps but then he got a IBD flare. And that >>> wasn't >>> fun. We even tried IV steroids this time and he still got a headache. >>> >>> So we're starting on subq in a week. Please tell me this is much more >>> tolerable! Do you still premeditate for subq? >>> >>> >>> 7yo CVID >>> >>> >> >> >> >> >> ------------------------------------ >> >> This forum is open to parents and caregivers of children diagnosed with >> a >> Primary Immune Deficiency. Opinions or medical advice stated here are >> the >> sole >> responsibility of the poster and should not be taken as professional >> advice. >> >> To unsubscribe -unsubscribegroups (DOT) >> To search group archives go to: >> /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 Thanks Kirsten, my son did better when we used the upper thigh, but he had a moderate site reaction. both thighs had red very very red and swollen the size of a softball. I know the medicine swells under the skin but as the medicine absorbed the reddness streaked down his leg? The nurse said we might need to slow down the infusion by using smaller tubing? He also ran low grade fever the next day and his legs hurt real bad? Hopefully next week will go better. Thanks everyone for you input.  mother of Kurt: CVID, Aspergers, ADHD, JIA, GERD, and Strabismus.         Wed, 5/11/11, Herzberg <skgcifamily@...> wrote: From: Herzberg <skgcifamily@...> Subject: RE: IVIG to subq Date: Wednesday, May 11, 2011, 3:20 PM  My son is 11 and we use the 27/9mm needles. The needles will tend to pop up a bit, but we use a gauze pad and then two strips of paper tape and make an X across them to hold them in place. Usually the plastic wing things will stick a bit eventually as well which helps hold it in. I hope you find something that works! > > > My son just switched from IVIG to SubQ, the nurse came out this morning for > our first Subq and tried his belly for 2 sites and the needles would not > stay in, every time my son breathed the needles would go in and out. she is > coming back this afternoon to try his upper thighs, he had headache and > nausea from IVIG so we thought this would work better for him, but so far > all it has done is make him very upset! Any advice would be appreciated, > Thanks > > Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus of > the eyes. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 Thanks Kirsten, my son did better when we used the upper thigh, but he had a moderate site reaction. both thighs had red very very red and swollen the size of a softball. I know the medicine swells under the skin but as the medicine absorbed the reddness streaked down his leg? The nurse said we might need to slow down the infusion by using smaller tubing? He also ran low grade fever the next day and his legs hurt real bad? Hopefully next week will go better. Thanks everyone for you input.  mother of Kurt: CVID, Aspergers, ADHD, JIA, GERD, and Strabismus.         Wed, 5/11/11, Herzberg <skgcifamily@...> wrote: From: Herzberg <skgcifamily@...> Subject: RE: IVIG to subq Date: Wednesday, May 11, 2011, 3:20 PM  My son is 11 and we use the 27/9mm needles. The needles will tend to pop up a bit, but we use a gauze pad and then two strips of paper tape and make an X across them to hold them in place. Usually the plastic wing things will stick a bit eventually as well which helps hold it in. I hope you find something that works! > > > My son just switched from IVIG to SubQ, the nurse came out this morning for > our first Subq and tried his belly for 2 sites and the needles would not > stay in, every time my son breathed the needles would go in and out. she is > coming back this afternoon to try his upper thighs, he had headache and > nausea from IVIG so we thought this would work better for him, but so far > all it has done is make him very upset! Any advice would be appreciated, > Thanks > > Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus of > the eyes. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 My son is thin and has to use his thighs, too. We use more needles, which helps with the site reactions (less volume per site). The site reactions do get better with time. My son uses 4 needles for only 20 ml. I know that is a lot of needles for so little volume compared to some kids on this list, but my son has sensitive skin. I don't know your son's volume, but you can go up to 6 needles/sites at a time....and, until he gets used to it, slowing down the rate is probably a good idea, then you can go back up depending on how he does. Mindy, mom of , 9 > Thanks Kirsten, my son did better when we used the upper thigh, but he > had a moderate site reaction. both thighs had red very very red and > swollen the size of a softball. I know the medicine swells under the skin > but as the medicine absorbed the reddness streaked down his leg? The > nurse said we might need to slow down the infusion by using smaller > tubing? He also ran low grade fever the next day and his legs hurt real > bad? Hopefully next week will go better. Thanks everyone for you > input. >  > mother of Kurt: CVID, Aspergers, ADHD, JIA, GERD, and Strabismus. >  >  >  >  >  >  >  >  > > > Wed, 5/11/11, Herzberg <skgcifamily@...> wrote: > > > From: Herzberg <skgcifamily@...> > Subject: RE: IVIG to subq > > Date: Wednesday, May 11, 2011, 3:20 PM > > >  > > > > My son is 11 and we use the 27/9mm needles. The needles will tend to pop > up > a bit, but we use a gauze pad and then two strips of paper tape and make > an > X across them to hold them in place. Usually the plastic wing things will > stick a bit eventually as well which helps hold it in. I hope you find > something that works! > > >> >> >> My son just switched from IVIG to SubQ, the nurse came out this morning > for >> our first Subq and tried his belly for 2 sites and the needles would not >> stay in, every time my son breathed the needles would go in and out. she > is >> coming back this afternoon to try his upper thighs, he had headache and >> nausea from IVIG so we thought this would work better for him, but so >> far >> all it has done is make him very upset! Any advice would be appreciated, >> Thanks >> >> Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus > of >> the eyes. >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 My son is thin and has to use his thighs, too. We use more needles, which helps with the site reactions (less volume per site). The site reactions do get better with time. My son uses 4 needles for only 20 ml. I know that is a lot of needles for so little volume compared to some kids on this list, but my son has sensitive skin. I don't know your son's volume, but you can go up to 6 needles/sites at a time....and, until he gets used to it, slowing down the rate is probably a good idea, then you can go back up depending on how he does. Mindy, mom of , 9 > Thanks Kirsten, my son did better when we used the upper thigh, but he > had a moderate site reaction. both thighs had red very very red and > swollen the size of a softball. I know the medicine swells under the skin > but as the medicine absorbed the reddness streaked down his leg? The > nurse said we might need to slow down the infusion by using smaller > tubing? He also ran low grade fever the next day and his legs hurt real > bad? Hopefully next week will go better. Thanks everyone for you > input. >  > mother of Kurt: CVID, Aspergers, ADHD, JIA, GERD, and Strabismus. >  >  >  >  >  >  >  >  > > > Wed, 5/11/11, Herzberg <skgcifamily@...> wrote: > > > From: Herzberg <skgcifamily@...> > Subject: RE: IVIG to subq > > Date: Wednesday, May 11, 2011, 3:20 PM > > >  > > > > My son is 11 and we use the 27/9mm needles. The needles will tend to pop > up > a bit, but we use a gauze pad and then two strips of paper tape and make > an > X across them to hold them in place. Usually the plastic wing things will > stick a bit eventually as well which helps hold it in. I hope you find > something that works! > > >> >> >> My son just switched from IVIG to SubQ, the nurse came out this morning > for >> our first Subq and tried his belly for 2 sites and the needles would not >> stay in, every time my son breathed the needles would go in and out. she > is >> coming back this afternoon to try his upper thighs, he had headache and >> nausea from IVIG so we thought this would work better for him, but so >> far >> all it has done is make him very upset! Any advice would be appreciated, >> Thanks >> >> Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus > of >> the eyes. >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 , We also use 4 needles for a total volume of 38mls. We tried the love handles and my son has the worst pain and reaction to those sites compared to sticking near the belly button. Right now we have them stacked two on each side of the belly button up/down if that makes sense. We infuse with the 600 rate flow attachment (not sure what those are called). We have had quite a bit of swelling and some redness, but nothing with streaks like you describe. I hope the next one goes better for you. Mom to Caelan 11 (on Hizentra) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 , We also use 4 needles for a total volume of 38mls. We tried the love handles and my son has the worst pain and reaction to those sites compared to sticking near the belly button. Right now we have them stacked two on each side of the belly button up/down if that makes sense. We infuse with the 600 rate flow attachment (not sure what those are called). We have had quite a bit of swelling and some redness, but nothing with streaks like you describe. I hope the next one goes better for you. Mom to Caelan 11 (on Hizentra) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 We use Gammagard. When we started SubQ he was on IV Gammagard and since Vivaglobin was more expensive the state of Oklahoma would only pay for Gammagard. I personally am happy that this was the plan at the time since my son has had such sensitivities and I feel the lesser concentration has been a good thing for him. He has had NO side effects from it in the 6 years we have been on it. BARBIE ________________________________ From: <bluetaelon@...> Sent: Sat, May 14, 2011 8:00:47 AM Subject: Re: IVIG to subq There are a number but they are considered " off label " use. We have used Gamunex 10% for 3 years sub-q and I know a lot of others do as well. Most of the IVIG meds can be used sub-q and are over in Europe where sub-q has been in year for decades. Its only " new " to the US so Dr's may not be as open about using something other then " officially approved " products. We were never given the choice really, since my daughter tends to be more sensitive they said a higher concentration products would be a bad idea for her. We've been happy with the gamunex:) ________________________________ From: " mindy@... " <mindy@...> Sent: Wed, May 11, 2011 8:11:08 AM Subject: Re: IVIG to subq Vivaglobin is no longer available in our area. Is there another subcutaneous product available? The doctor wanted to continue Hizentra for three months and see if his migraines were better with the premed. He has been sicker on Hizentra than Viva (still on antibiotics, two months now; changed again yesterday). Mindy, mom to , 9, CVID > Isn't the Hizentra a more concentrated product? Wouldn't it be better to > switch > to a lower concentration product? > > > > > > > ________________________________ > From: " mindy@... " <mindy@...> > > Sent: Wed, May 11, 2011 7:44:30 AM > Subject: Re: IVIG to subq > > had very few side effects with Vivaglobin SubQ (mostly local site > reactions), but has been on Hizentra for 2 months and requires premeds > with Naproxen and prelone 20 mg to prevent migraine (already on max > antihistamines). He did not require prelone with viva. His side effects > with one dose of IVIG was headache and malaise for over a week. He does > have significant migraine problems this spring, so it is probably not > totally due to the Hizentra... > > I think that you will have much better luck with subQ. > > Mindy, mom to , 9, CVID (I may have told you this already > >> We just can't seem to control the IVIG side effects. My son had aseptic >> meningitis with the first infusion. They switched products, slowed down >> the rate to a max of 25 ml/hr and premeditated with IV fluids prior to >> the >> infusion, benadryl and ibuprofen. He still gets a bad headache with >> vomiting at some point after the infusion (1-4 days post). Continuous >> ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't >> fun. We even tried IV steroids this time and he still got a headache. >> >> So we're starting on subq in a week. Please tell me this is much more >> tolerable! Do you still premeditate for subq? >> >> >> 7yo CVID >> >> > > > > > ------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole > responsibility of the poster and should not be taken as professional > advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 We use Gammagard. When we started SubQ he was on IV Gammagard and since Vivaglobin was more expensive the state of Oklahoma would only pay for Gammagard. I personally am happy that this was the plan at the time since my son has had such sensitivities and I feel the lesser concentration has been a good thing for him. He has had NO side effects from it in the 6 years we have been on it. BARBIE ________________________________ From: <bluetaelon@...> Sent: Sat, May 14, 2011 8:00:47 AM Subject: Re: IVIG to subq There are a number but they are considered " off label " use. We have used Gamunex 10% for 3 years sub-q and I know a lot of others do as well. Most of the IVIG meds can be used sub-q and are over in Europe where sub-q has been in year for decades. Its only " new " to the US so Dr's may not be as open about using something other then " officially approved " products. We were never given the choice really, since my daughter tends to be more sensitive they said a higher concentration products would be a bad idea for her. We've been happy with the gamunex:) ________________________________ From: " mindy@... " <mindy@...> Sent: Wed, May 11, 2011 8:11:08 AM Subject: Re: IVIG to subq Vivaglobin is no longer available in our area. Is there another subcutaneous product available? The doctor wanted to continue Hizentra for three months and see if his migraines were better with the premed. He has been sicker on Hizentra than Viva (still on antibiotics, two months now; changed again yesterday). Mindy, mom to , 9, CVID > Isn't the Hizentra a more concentrated product? Wouldn't it be better to > switch > to a lower concentration product? > > > > > > > ________________________________ > From: " mindy@... " <mindy@...> > > Sent: Wed, May 11, 2011 7:44:30 AM > Subject: Re: IVIG to subq > > had very few side effects with Vivaglobin SubQ (mostly local site > reactions), but has been on Hizentra for 2 months and requires premeds > with Naproxen and prelone 20 mg to prevent migraine (already on max > antihistamines). He did not require prelone with viva. His side effects > with one dose of IVIG was headache and malaise for over a week. He does > have significant migraine problems this spring, so it is probably not > totally due to the Hizentra... > > I think that you will have much better luck with subQ. > > Mindy, mom to , 9, CVID (I may have told you this already > >> We just can't seem to control the IVIG side effects. My son had aseptic >> meningitis with the first infusion. They switched products, slowed down >> the rate to a max of 25 ml/hr and premeditated with IV fluids prior to >> the >> infusion, benadryl and ibuprofen. He still gets a bad headache with >> vomiting at some point after the infusion (1-4 days post). Continuous >> ibuprofen for 3 days helps but then he got a IBD flare. And that wasn't >> fun. We even tried IV steroids this time and he still got a headache. >> >> So we're starting on subq in a week. Please tell me this is much more >> tolerable! Do you still premeditate for subq? >> >> >> 7yo CVID >> >> > > > > > ------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole > responsibility of the poster and should not be taken as professional > advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 I will say again that we use the outer hips ( love handles) there is good tissue spred there and my son says it hurts MUCH less. It also is where they often use it in Europe. We do 30cc per site which is not the usual but he does not tolerate the sticks emotionally so we had to see what worked for him. He also says he does not have to LOOK at it there and does not effect his walking etc. BARBIE ________________________________ From: Weiss <bwkw98@...> Sent: Sat, May 14, 2011 10:38:31 AM Subject: RE: IVIG to subq Thanks Kirsten, my son did better when we used the upper thigh, but he had a moderate site reaction. both thighs had red very very red and swollen the size of a softball. I know the medicine swells under the skin but as the medicine absorbed the reddness streaked down his leg? The nurse said we might need to slow down the infusion by using smaller tubing? He also ran low grade fever the next day and his legs hurt real bad? Hopefully next week will go better. Thanks everyone for you input. mother of Kurt: CVID, Aspergers, ADHD, JIA, GERD, and Strabismus. Wed, 5/11/11, Herzberg <skgcifamily@...> wrote: From: Herzberg <skgcifamily@...> Subject: RE: IVIG to subq Date: Wednesday, May 11, 2011, 3:20 PM My son is 11 and we use the 27/9mm needles. The needles will tend to pop up a bit, but we use a gauze pad and then two strips of paper tape and make an X across them to hold them in place. Usually the plastic wing things will stick a bit eventually as well which helps hold it in. I hope you find something that works! > > > My son just switched from IVIG to SubQ, the nurse came out this morning for > our first Subq and tried his belly for 2 sites and the needles would not > stay in, every time my son breathed the needles would go in and out. she is > coming back this afternoon to try his upper thighs, he had headache and > nausea from IVIG so we thought this would work better for him, but so far > all it has done is make him very upset! Any advice would be appreciated, > Thanks > > Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus of > the eyes. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 I will say again that we use the outer hips ( love handles) there is good tissue spred there and my son says it hurts MUCH less. It also is where they often use it in Europe. We do 30cc per site which is not the usual but he does not tolerate the sticks emotionally so we had to see what worked for him. He also says he does not have to LOOK at it there and does not effect his walking etc. BARBIE ________________________________ From: Weiss <bwkw98@...> Sent: Sat, May 14, 2011 10:38:31 AM Subject: RE: IVIG to subq Thanks Kirsten, my son did better when we used the upper thigh, but he had a moderate site reaction. both thighs had red very very red and swollen the size of a softball. I know the medicine swells under the skin but as the medicine absorbed the reddness streaked down his leg? The nurse said we might need to slow down the infusion by using smaller tubing? He also ran low grade fever the next day and his legs hurt real bad? Hopefully next week will go better. Thanks everyone for you input. mother of Kurt: CVID, Aspergers, ADHD, JIA, GERD, and Strabismus. Wed, 5/11/11, Herzberg <skgcifamily@...> wrote: From: Herzberg <skgcifamily@...> Subject: RE: IVIG to subq Date: Wednesday, May 11, 2011, 3:20 PM My son is 11 and we use the 27/9mm needles. The needles will tend to pop up a bit, but we use a gauze pad and then two strips of paper tape and make an X across them to hold them in place. Usually the plastic wing things will stick a bit eventually as well which helps hold it in. I hope you find something that works! > > > My son just switched from IVIG to SubQ, the nurse came out this morning for > our first Subq and tried his belly for 2 sites and the needles would not > stay in, every time my son breathed the needles would go in and out. she is > coming back this afternoon to try his upper thighs, he had headache and > nausea from IVIG so we thought this would work better for him, but so far > all it has done is make him very upset! Any advice would be appreciated, > Thanks > > Kurt age 11, CVID, Asbergers Syndrome, ADHD, JIA, Asthma, and Strabismus of > the eyes. > Quote Link to comment Share on other sites More sharing options...
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