Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 hi all, Has anyone had problems with reactions to gammagard? I have been talking to a mom whose 9 year old receives 43gms (2days, 2 infusions) monthly for jra. The second day, he has horrible headaches and vomiting. She is at her wits end and not wanting to continue with IVIG. I was hoping perhaps someone here might have some words of wisdom regarding either experience with gammagard (my daughter uses Vivaglobin), or suggestions/ideas... Thank you in advance. (, 16, CVID) --------------------------------- Don't get soaked. Take a quick peak at the forecast with the Search weather shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 We had that reaction to IVIG using Polygam S/D in the hospital... we now use Gammaguard liquid at home SCIG and have not had any side-effects. We had to give our boys extra IV benadryl at the end of the infusion and keep them on ibuprofen for 2-3 days post infusion so that they would not get headaches and vomit. Grace and peace be with you, Pattie Life is fragile--handle with prayer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 We had that reaction to IVIG using Polygam S/D in the hospital... we now use Gammaguard liquid at home SCIG and have not had any side-effects. We had to give our boys extra IV benadryl at the end of the infusion and keep them on ibuprofen for 2-3 days post infusion so that they would not get headaches and vomit. Grace and peace be with you, Pattie Life is fragile--handle with prayer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Thanks - I don't think they have used IV benadryl...I will sugget discussing that (and I suggested SCIG) with his dr. Can SCIG be done for that volume (43 gms) on a 9 year old? (I still have soooo much to learn) Pattie Curran <catholicmomof3@...> wrote: We had that reaction to IVIG using Polygam S/D in the hospital... we now use Gammaguard liquid at home SCIG and have not had any side-effects. We had to give our boys extra IV benadryl at the end of the infusion and keep them on ibuprofen for 2-3 days post infusion so that they would not get headaches and vomit. Grace and peace be with you, Pattie Life is fragile--handle with prayer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Thanks - I don't think they have used IV benadryl...I will sugget discussing that (and I suggested SCIG) with his dr. Can SCIG be done for that volume (43 gms) on a 9 year old? (I still have soooo much to learn) Pattie Curran <catholicmomof3@...> wrote: We had that reaction to IVIG using Polygam S/D in the hospital... we now use Gammaguard liquid at home SCIG and have not had any side-effects. We had to give our boys extra IV benadryl at the end of the infusion and keep them on ibuprofen for 2-3 days post infusion so that they would not get headaches and vomit. Grace and peace be with you, Pattie Life is fragile--handle with prayer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 They would have to use 4 sites-- we use 2 sites for 25ml/2.5g Grace and peace be with you, Pattie Life is fragile--handle with prayer. Thanks - I don't think they have used IV benadryl...I will sugget discussing that (and I suggested SCIG) with his dr. Can SCIG be done for that volume (43 gms) on a 9 year old? (I still have soooo much to learn) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Pattie, the set is made by a company called , and I am pretty sure they do make a quad set because initially they both quad and trifurcated but the nurse teaching us felt trifurcated was sufficient, so that is just what we have used and I have always reordered tri. Who do you get your supplies though? We use Accredo, though I feel sure it would be available through other companies. Pattie Curran <catholicmomof3@...> wrote: They would have to use 4 sites-- we use 2 sites for 25ml/2.5g Grace and peace be with you, Pattie Life is fragile--handle with prayer. Thanks - I don't think they have used IV benadryl...I will sugget discussing that (and I suggested SCIG) with his dr. Can SCIG be done for that volume (43 gms) on a 9 year old? (I still have soooo much to learn) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 We go through Accredo. Only one company currently makes a set that is needless.i.e. the needle comes out and a cath stays in. Grace and peace be with you, Pattie Life is fragile--handle with prayer. Pattie, the set is made by a company called , and I am pretty sure they do make a quad set because initially they both quad and trifurcated but the nurse teaching us felt trifurcated was sufficient, so that is just what we have used and I have always reordered tri. Who do you get your supplies though? We use Accredo, though I feel sure it would be available through other companies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 We have had not problems and have used gammagard for many years _____ From: [mailto: ] On Behalf Of nancy barnes Sent: Saturday, February 24, 2007 9:43 AM pedPID Subject: question re gammagard hi all, Has anyone had problems with reactions to gammagard? I have been talking to a mom whose 9 year old receives 43gms (2days, 2 infusions) monthly for jra. The second day, he has horrible headaches and vomiting. She is at her wits end and not wanting to continue with IVIG. I was hoping perhaps someone here might have some words of wisdom regarding either experience with gammagard (my daughter uses Vivaglobin), or suggestions/ideas... Thank you in advance. (, 16, CVID) --------------------------------- Don't get soaked. Take a quick peak at the forecast with the Search weather shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Is he doing liquid or S/D? The first thing I would look at is the rate of infusion. If that was correct....I'd try to look at what premeds he is using, and post meds too. Finally, has he tried other brands? What was the reaction there? Every person reacts to every brand differently. Charlie and are very happy Gammaguard liquid users...no side effects at all. has never tried the liquid but is on gammaguard S/D... Which used to be called polygam. It has been a lifesaver for us. Seriously...he was on a different brand and got horrific headaches. Even on scig. The headaches were so bad he used to slam his head against the wall screaming owie....and it lasted two or three days even with a super slow rate. On S/D he can go his max rate and never has side effects. I would be inclined to look into a few easy answers and then try a different brand if they don't help. Dayna S Fladhammer Sent from T-Mobil MDA RE: question re gammagard We had that reaction to IVIG using Polygam S/D in the hospital... we now use Gammaguard liquid at home SCIG and have not had any side-effects. We had to give our boys extra IV benadryl at the end of the infusion and keep them on ibuprofen for 2-3 days post infusion so that they would not get headaches and vomit. Grace and peace be with you, Pattie Life is fragile--handle with prayer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 My son was on flebogamma, and then switched to gammagard- He had headaches and throwing up with both products. He is sick for about 10 days afterwards. It is a nightmare, and I dread each time it is time for the next infusion. ---- nancy barnes <nancyb315@...> wrote: > hi all, > > Has anyone had problems with reactions to gammagard? > > I have been talking to a mom whose 9 year old receives 43gms (2days, 2 infusions) monthly for jra. The second day, he has horrible headaches and vomiting. She is at her wits end and not wanting to continue with IVIG. > > I was hoping perhaps someone here might have some words of wisdom regarding either experience with gammagard (my daughter uses Vivaglobin), or suggestions/ideas... > > Thank you in advance. > > > > (, 16, CVID) > > > --------------------------------- > Don't get soaked. Take a quick peak at the forecast > with the Search weather shortcut. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 Thank you to all who answered regarding gammagard. Dayna - I am assuming he is doing liquid, since his mom said he is doing 10%..that is the liquid, right? He premeds with benadryl, tylenol, and is well hydrated. I wonder if it is the volume he has to receive? (43 gms) Can you do subQ with that ammount on a kid 9? They have tried adjusting his rate, but I don't know exactly what. The mom is seeming resigned to the DMARD's, which is hefty meds. Thanks, dfladhammer@... wrote: Is he doing liquid or S/D? The first thing I would look at is the rate of infusion. If that was correct....I'd try to look at what premeds he is using, and post meds too. Finally, has he tried other brands? What was the reaction there? Every person reacts to every brand differently. Charlie and are very happy Gammaguard liquid users...no side effects at all. has never tried the liquid but is on gammaguard S/D... Which used to be called polygam. It has been a lifesaver for us. Seriously...he was on a different brand and got horrific headaches. Even on scig. The headaches were so bad he used to slam his head against the wall screaming owie....and it lasted two or three days even with a super slow rate. On S/D he can go his max rate and never has side effects. I would be inclined to look into a few easy answers and then try a different brand if they don't help. Dayna S Fladhammer Sent from T-Mobil MDA RE: question re gammagard We had that reaction to IVIG using Polygam S/D in the hospital... we now use Gammaguard liquid at home SCIG and have not had any side-effects. We had to give our boys extra IV benadryl at the end of the infusion and keep them on ibuprofen for 2-3 days post infusion so that they would not get headaches and vomit. Grace and peace be with you, Pattie Life is fragile--handle with prayer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 Hi My son gets hi dose IVIG for a severe neurological disorder. For him the normal dose would be 2 gms/kilo taken over two days and usually given once/month. So in his case he was getting 50 gms over two days. He had terrible reactions to Gammagard- seizures, headaches, vomitting- usually lasting 2-3 days. We switched to gamunex and have fewer reactions however for us the real solution was to give 25 gms every two weeks instead of 50 every 4. We always stick to a slow rate- max is 50 mls/hr and we very gradually titrate up to this rate (over two hours). Each infusion therefore takes us 5-6 hours He now has no reactions at all. Hi dose therapy is tricky and every persons body reacts differently. It took us a long time- over a year to get everything working well but for us it was extremely important to continue to play with the IVIG as the alternative tx was pretty hefty brain surgery. Scid was not an option for us since my son must take such a large dose and is very skinny.Also where we are located SCID is basically unheard of for a situation like ours. THis solution worked well for us. I wish your friend the best. Faye RE: question re gammagard We had that reaction to IVIG using Polygam S/D in the hospital... we now use Gammaguard liquid at home SCIG and have not had any side-effects. We had to give our boys extra IV benadryl at the end of the infusion and keep them on ibuprofen for 2-3 days post infusion so that they would not get headaches and vomit. Grace and peace be with you, Pattie Life is fragile--handle with prayer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 Blake gets 20grams Gammagard S/D 10%(it is the way it is mixed it can be in 5% or 10% ofr IVIG infusion) Every 2 weeks. Blake had bad reactions to Polygam & several others. He has Aseptic Meningitis 3 times when he was getting Gammagard Liquid. If the child has a very low IgA or None at all, it may be from the Gammagard Liuid(IF that is what he gets) it has a good bit of IgA compared to Gammagard Liquid which has a very minut amount of IgA present. When trying Gammagard Liquid, we were told by the nurses & pharmacy at teh infusion center that there was no way to get the Gammagard S/D. That changed after someone on here told me who to get in touch with at Baxter & Thanks to this Advice, the Pharmacy has a stock pile for just Blake. We were told by the Immunologist with the Pharmacy that gets the IVIG for Blake, they were waiting for an accident to happen by not letting him know that the had a time getting Gammagard S/D.... not only that a law suit could have been at hand!!! But now all are on the same page with Blake!!! We also found out that Blake does make the Anti IgA Antibody.....this alone has it's problems!!!! > > hi all, > > Has anyone had problems with reactions to gammagard? > > I have been talking to a mom whose 9 year old receives 43gms (2days, 2 infusions) monthly for jra. The second day, he has horrible headaches and vomiting. She is at her wits end and not wanting to continue with IVIG. > > I was hoping perhaps someone here might have some words of wisdom regarding either experience with gammagard (my daughter uses Vivaglobin), or suggestions/ideas... > > Thank you in advance. > > > > (, 16, CVID) > > > --------------------------------- > Don't get soaked. Take a quick peak at the forecast > with the Search weather shortcut. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 OOPS!! forgot to sign the last note!! (Mom to Blake,15, CVID with Complete T-Cell Dysfunction, Asperger's Syndrome, Asthma & GERD, Rare Blood Clotting Disorder > > hi all, > > Has anyone had problems with reactions to gammagard? > > I have been talking to a mom whose 9 year old receives 43gms (2days, 2 infusions) monthly for jra. The second day, he has horrible headaches and vomiting. She is at her wits end and not wanting to continue with IVIG. > > I was hoping perhaps someone here might have some words of wisdom regarding either experience with gammagard (my daughter uses Vivaglobin), or suggestions/ideas... > > Thank you in advance. > > > > (, 16, CVID) > > > --------------------------------- > Don't get soaked. Take a quick peak at the forecast > with the Search weather shortcut. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 One of my boys head that reactions to every IV product that we tried (gammagard, plygam, gammunex). We were very noncompliant with his IVIG because of the reactions. They were disabling. Anyway, we do vivaglobin and things have been much better. Kris > > hi all, > > Has anyone had problems with reactions to gammagard? > > I have been talking to a mom whose 9 year old receives 43gms (2days, 2 infusions) monthly for jra. The second day, he has horrible headaches and vomiting. She is at her wits end and not wanting to continue with IVIG. > > I was hoping perhaps someone here might have some words of wisdom regarding either experience with gammagard (my daughter uses Vivaglobin), or suggestions/ideas... > > Thank you in advance. > > > > (, 16, CVID) > > > --------------------------------- > Don't get soaked. Take a quick peak at the forecast > with the Search weather shortcut. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 One of my boys head that reactions to every IV product that we tried (gammagard, plygam, gammunex). We were very noncompliant with his IVIG because of the reactions. They were disabling. Anyway, we do vivaglobin and things have been much better. Kris > > hi all, > > Has anyone had problems with reactions to gammagard? > > I have been talking to a mom whose 9 year old receives 43gms (2days, 2 infusions) monthly for jra. The second day, he has horrible headaches and vomiting. She is at her wits end and not wanting to continue with IVIG. > > I was hoping perhaps someone here might have some words of wisdom regarding either experience with gammagard (my daughter uses Vivaglobin), or suggestions/ideas... > > Thank you in advance. > > > > (, 16, CVID) > > > --------------------------------- > Don't get soaked. Take a quick peak at the forecast > with the Search weather shortcut. > > Quote Link to comment Share on other sites More sharing options...
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