Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 We had our neurologist order it and a in home nurse came to our home and gave IVIG to my daughter. That was a great way to do it because she was at home and then she could feel more comfortable. Having a local doctor order it helped too because then medicaide paid for it. sini divvela <divvela51@...> wrote: We are planning to do IVIG for my 23 month old. Does any body know doctor in ATL area who does this? We see Dr B in Florida and don't like to drive for each infusion. ThanksSrini Never miss a thing. Make your homepage. Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2008 Report Share Posted February 22, 2008 Diane - We used IVIG about 2 years ago for our daughter. Our understanding is that it is good for arthritis, but very good for uveitis! Unfortunately, Caroline had a bad reaction to the IVIG (severe migraines) so we had to stop. I hope that it works for Maggie though!!! Alia and Caroline, age 6, poly and uveitis IVIg Good Evening Everyone, I guess this message would be for anyone who could give me any information on the benefits of IVIg infusions for arthritis. Maggie had her first infusion this last Tuesday, they are using this for two reasons.,First for a disease modifier and second to help with inflammation. I understood the first one but was thrown a bit by the second. It would be awesome if this works for both but I have never heard of anyone using it for arthritis. Have any of you or your children had success with IVIg for inflammation? If so how long did it take before you noticed a change? We seem to be learning something new every day!! Diane and Maggie 10 (OI,CP,Inflammatory Arthritis,Polyarticular JIA,Uveitis) __________________________________________________________ Never miss a thing. Make your home page. http://www./r/hs ________________________________________________________________________ More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2008 Report Share Posted February 22, 2008 Diane, My daughter has been on IVIG (switched to subQ application 18 months ago) but for cvid, a Primary Immune Deficiency. It has not helped with her arthritis, but obviously it must be beneficial for some, or it would not be an accepted therapy for arthritis. I do hope it is of great benefit for Maggie!! (, 17, poly, cvid, migraines) Diane Wiederholt <hockeytough@...> wrote: Good Evening Everyone, I guess this message would be for anyone who could give me any information on the benefits of IVIg infusions for arthritis. Maggie had her first infusion this last Tuesday, they are using this for two reasons.,First for a disease modifier and second to help with inflammation. I understood the first one but was thrown a bit by the second. It would be awesome if this works for both but I have never heard of anyone using it for arthritis. Have any of you or your children had success with IVIg for inflammation? If so how long did it take before you noticed a change? We seem to be learning something new every day!! Diane and Maggie 10 (OI,CP,Inflammatory Arthritis,Polyarticular JIA,Uveitis) __________________________________________________________ Never miss a thing. Make your home page. http://www./r/hs --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2008 Report Share Posted February 22, 2008 Hi Diane, My daughter has been on IvIg infusions for 3 years now. It works wonderfully for her mild arthritis, and severe uveitis. What is wonderful about ivig is that it does not suppress the immune system, in fact it helps you to recover more quickly. There is a wonderful website, primary immune deficiency syndrome, that has an animation that describes how it helps the body to react in a normal way instead of attacking the wrong places causing inflammation. Benefits : it really works. It doesn't suppress the immune system. Because of it being an old med, insurance usually covers it no questions asked. The reality of it : It is a long process, feels endless sometimes. Because of how thick the medicine is, your child needs to drink a lot of water. This is so important, because if can help her feel better, and avoid nasty headaches that can be a side effect. My daughter had a port a cath put it when she got down to one good vein in her arm. I believe the steroids in the beginning took a toll on them. A port a cath has saved her from a lot of stress, and has been a blessing. Infusing slowly is important. When my daughter first started her infusions they did it over a 3 day period, which is how they should start this process. Don't let them rush you in a one day thing. That is a sure fire way of making your child sick. My daughter had to double her dose of medication, though, and gets infused over a 5 day period, every 4 weeks. The school provides a tutor for her (one hour) during the infusion week. I probably gave you more info than you wanted. My daughter does very well with ivig. She found a brand that she does well with, and they have managed to get that for her every month. If one brand doesn't work, don't give up, try another. She usually gets a headache and fatigued on the Sunday after infusions. We just know that is going to be a do nothing day. Ivig has been my daughters saving grace, and I hope it is yours, too. ' & a 12 jia/uveitis Diane Wiederholt <hockeytough@...> wrote: Good Evening Everyone, I guess this message would be for anyone who could give me any information on the benefits of IVIg infusions for arthritis. Maggie had her first infusion this last Tuesday, they are using this for two reasons.,First for a disease modifier and second to help with inflammation. I understood the first one but was thrown a bit by the second. It would be awesome if this works for both but I have never heard of anyone using it for arthritis. Have any of you or your children had success with IVIg for inflammation? If so how long did it take before you noticed a change? We seem to be learning something new every day!! Diane and Maggie 10 (OI,CP,Inflammatory Arthritis,Polyarticular JIA,Uveitis) __________________________________________________________ Never miss a thing. Make your home page. http://www./r/hs --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2008 Report Share Posted February 22, 2008 , Thank you so much for the info!! She did get a horrible headache after her first infusion and woke up the next morning vomiting. By the next day she was a little bit better and the following night she slept through the night for the first time since December. I think she has seen a glimmer of hope already but not sure if it was from the IVIg, or the increase in oral steroids. (huge flare up right now) They ran the infusion very slow but all in one day, I think it was in about 12 hours. She just spent the night in peds. under 23 hour observation. Maggie has had several port's and PICC lines because of her Pamidronate Infusions she gets for her OI, but ended up with many infections because of it. She is down to one vein on the inside of her wrist that will hold an IV for no more than two days in a row and then blows!! How long does it usually take your daughter to feel the benefit of her infusions? Maggie is on 40mgs of Prednisone daily, 25mgs Methotrexate injection weekly,Steroid eye drops daily, 200mgs of Celebrex daily, and planning to start Humira the first week in March. (these are just her arthritis and uveitis meds) We are hoping to down size on the pill box with using the IVIg. I pray that she will be able to benefit from it as your daughter did. Thank you!! Diane and Maggie 10 (OI, CP, inflammatory arthritis, polyarticular JIA, Uveitis) --- ' Taunton <lcdanceacademy@...> wrote: > Hi Diane, > My daughter has been on IvIg infusions for 3 years > now. It works wonderfully for her mild arthritis, > and severe uveitis. What is wonderful about ivig is > that it does not suppress the immune system, in fact > it helps you to recover more quickly. There is a > wonderful website, primary immune deficiency > syndrome, that has an animation that describes how > it helps the body to react in a normal way instead > of attacking the wrong places causing inflammation. > > > Benefits : it really works. It doesn't suppress > the immune system. Because of it being an old med, > insurance usually covers it no questions asked. > > The reality of it : It is a long process, feels > endless sometimes. Because of how thick the > medicine is, your child needs to drink a lot of > water. This is so important, because if can help > her feel better, and avoid nasty headaches that can > be a side effect. > > My daughter had a port a cath put it when she got > down to one good vein in her arm. I believe the > steroids in the beginning took a toll on them. A > port a cath has saved her from a lot of stress, and > has been a blessing. Infusing slowly is important. > When my daughter first started her infusions they > did it over a 3 day period, which is how they should > start this process. Don't let them rush you in a > one day thing. That is a sure fire way of making > your child sick. My daughter had to double her dose > of medication, though, and gets infused over a 5 day > period, every 4 weeks. The school provides a tutor > for her (one hour) during the infusion week. > > I probably gave you more info than you wanted. My > daughter does very well with ivig. She found a > brand that she does well with, and they have managed > to get that for her every month. If one brand > doesn't work, don't give up, try another. She > usually gets a headache and fatigued on the Sunday > after infusions. We just know that is going to be a > do nothing day. > > Ivig has been my daughters saving grace, and I > hope it is yours, too. > > ' & a 12 jia/uveitis > > Diane Wiederholt <hockeytough@...> wrote: > Good Evening Everyone, > I guess this message would be for anyone who could > give me any information on the benefits of IVIg > infusions for arthritis. > Maggie had her first infusion this last Tuesday, > they are using this for two reasons.,First for a > disease modifier and second to help with > inflammation. > I understood the first one but was thrown a bit by > the > second. It would be awesome if this works for both > but > I have never heard of anyone using it for arthritis. > > Have any of you or your children had success with > IVIg for inflammation? > If so how long did it take before you noticed a > change? > We seem to be learning something new every day!! > > Diane and Maggie 10 (OI,CP,Inflammatory > Arthritis,Polyarticular JIA,Uveitis) > > __________________________________________________________ > Never miss a thing. Make your home page. > http://www./r/hs > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Search. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Diane, Would the prescribing Dr. be up to going over a 3 day period (or even 2 day due to the vein issue) with infusions vs. a one day? Let them know what your daughter was experiencing. My daughters gets extremely sick with steriods. She does not tolerate oral steroids anymore. The last time they HAD to use steroids was in a 3 day pulse iv because the side effects are little compared to taking them orally. My daughter got pneumonia on Cellcept with cyclosporine, and on chlorambucil. That is why they thought ivig would be helpful to her, and it is. I think it was by the third month that we actually saw the benefits from ivig. She has been on it every since, and hardly ever sick. She is in medicated durable remission, and we are just looking for the day to start tapering. I'm a little worried that the ugly beast will rear its ugly head when that happens, but I guess I should just enjoy the now! Have her drink water, even flavor it if that helps. It sounds like they infused slow, but if they could even add a day to help her body rest. There is another way that I believe a parent wrote about. SubQ ivig is amazing for so many people. My daughter takes too high of a dose to receive it this way. The side effects are almost nil with it this way. I encourage you to ask that parent how to go about it. If my daughter could do this I'd jump on it. ' & a 12 jia/uveitis Diane Wiederholt <hockeytough@...> wrote: , Thank you so much for the info!! She did get a horrible headache after her first infusion and woke up the next morning vomiting. By the next day she was a little bit better and the following night she slept through the night for the first time since December. I think she has seen a glimmer of hope already but not sure if it was from the IVIg, or the increase in oral steroids. (huge flare up right now) They ran the infusion very slow but all in one day, I think it was in about 12 hours. She just spent the night in peds. under 23 hour observation. Maggie has had several port's and PICC lines because of her Pamidronate Infusions she gets for her OI, but ended up with many infections because of it. She is down to one vein on the inside of her wrist that will hold an IV for no more than two days in a row and then blows!! How long does it usually take your daughter to feel the benefit of her infusions? Maggie is on 40mgs of Prednisone daily, 25mgs Methotrexate injection weekly,Steroid eye drops daily, 200mgs of Celebrex daily, and planning to start Humira the first week in March. (these are just her arthritis and uveitis meds) We are hoping to down size on the pill box with using the IVIg. I pray that she will be able to benefit from it as your daughter did. Thank you!! Diane and Maggie 10 (OI, CP, inflammatory arthritis, polyarticular JIA, Uveitis) --- ' Taunton <lcdanceacademy@...> wrote: > Hi Diane, > My daughter has been on IvIg infusions for 3 years > now. It works wonderfully for her mild arthritis, > and severe uveitis. What is wonderful about ivig is > that it does not suppress the immune system, in fact > it helps you to recover more quickly. There is a > wonderful website, primary immune deficiency > syndrome, that has an animation that describes how > it helps the body to react in a normal way instead > of attacking the wrong places causing inflammation. > > > Benefits : it really works. It doesn't suppress > the immune system. Because of it being an old med, > insurance usually covers it no questions asked. > > The reality of it : It is a long process, feels > endless sometimes. Because of how thick the > medicine is, your child needs to drink a lot of > water. This is so important, because if can help > her feel better, and avoid nasty headaches that can > be a side effect. > > My daughter had a port a cath put it when she got > down to one good vein in her arm. I believe the > steroids in the beginning took a toll on them. A > port a cath has saved her from a lot of stress, and > has been a blessing. Infusing slowly is important. > When my daughter first started her infusions they > did it over a 3 day period, which is how they should > start this process. Don't let them rush you in a > one day thing. That is a sure fire way of making > your child sick. My daughter had to double her dose > of medication, though, and gets infused over a 5 day > period, every 4 weeks. The school provides a tutor > for her (one hour) during the infusion week. > > I probably gave you more info than you wanted. My > daughter does very well with ivig. She found a > brand that she does well with, and they have managed > to get that for her every month. If one brand > doesn't work, don't give up, try another. She > usually gets a headache and fatigued on the Sunday > after infusions. We just know that is going to be a > do nothing day. > > Ivig has been my daughters saving grace, and I > hope it is yours, too. > > ' & a 12 jia/uveitis > > Diane Wiederholt <hockeytough@...> wrote: > Good Evening Everyone, > I guess this message would be for anyone who could > give me any information on the benefits of IVIg > infusions for arthritis. > Maggie had her first infusion this last Tuesday, > they are using this for two reasons.,First for a > disease modifier and second to help with > inflammation. > I understood the first one but was thrown a bit by > the > second. It would be awesome if this works for both > but > I have never heard of anyone using it for arthritis. > > Have any of you or your children had success with > IVIg for inflammation? > If so how long did it take before you noticed a > change? > We seem to be learning something new every day!! > > Diane and Maggie 10 (OI,CP,Inflammatory > Arthritis,Polyarticular JIA,Uveitis) > > __________________________________________________________ > Never miss a thing. Make your home page. > http://www./r/hs > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Search. > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 , Because they are using the IVIg as a disease modifier as well with Maggie, she has had huge infections that she just does not fight even with antibiotics. Becteria just seems to love this kid, she is on a pretty high dose, I want to say 51mgs was what it said on the bottle. I can ask them about splitting up the dose, this may help her. She has been on Prednisone since April when everything went haywire, they rollercoaster the dose but the lowest it has been is 10mgs. She is now on 40mgs because of a recent flare up and it is horrible to wean her from as she notices each 1mg drop. Do you guys do the infusions as out patient or does she stay in the hospital the entire time? Maggie is home schooled and her teacher comes to our house or to the peds unit.......it is awesome for her!! This way she stays caught up and is actually three grade levels ahead! Thanks for the input!! Diane and Maggie age 10 (OI,CP,inflammatory arthritis, Poly JIA, Uveitis) --- ' Taunton <lcdanceacademy@...> wrote: > Diane, > > Would the prescribing Dr. be up to going over a 3 > day period (or even 2 day due to the vein issue) > with infusions vs. a one day? Let them know what > your daughter was experiencing. My daughters gets > extremely sick with steriods. She does not tolerate > oral steroids anymore. The last time they HAD to > use steroids was in a 3 day pulse iv because the > side effects are little compared to taking them > orally. My daughter got pneumonia on Cellcept with > cyclosporine, and on chlorambucil. That is why they > thought ivig would be helpful to her, and it is. > > I think it was by the third month that we actually > saw the benefits from ivig. She has been on it > every since, and hardly ever sick. She is in > medicated durable remission, and we are just looking > for the day to start tapering. I'm a little worried > that the ugly beast will rear its ugly head when > that happens, but I guess I should just enjoy the > now! > > Have her drink water, even flavor it if that > helps. It sounds like they infused slow, but if > they could even add a day to help her body rest. > There is another way that I believe a parent wrote > about. SubQ ivig is amazing for so many people. My > daughter takes too high of a dose to receive it this > way. The side effects are almost nil with it this > way. I encourage you to ask that parent how to go > about it. If my daughter could do this I'd jump on > it. > > ' & a 12 jia/uveitis > > > > Diane Wiederholt <hockeytough@...> wrote: > , > Thank you so much for the info!! > She did get a horrible headache after her first > infusion and woke up the next morning vomiting. By > the next day she was a little bit better and the > following night she slept through the night for the > first time since December. I think she has seen a > glimmer of hope already but not sure if it was from > the IVIg, or the increase in oral steroids. (huge > flare up right now) > They ran the infusion very slow but all in one day, > I think it was in about 12 hours. She just spent the > night in peds. under 23 hour observation. > Maggie has had several port's and PICC lines because > of her Pamidronate Infusions she gets for her OI, > but > ended up with many infections because of it. She is > down to one vein on the inside of her wrist that > will > hold an IV for no more than two days in a row and > then > blows!! > How long does it usually take your daughter to feel > the benefit of her infusions? > Maggie is on 40mgs of Prednisone daily, 25mgs > Methotrexate injection weekly,Steroid eye drops > daily, > 200mgs of Celebrex daily, and planning to start > Humira > the first week in March. (these are just her > arthritis > and uveitis meds) We are hoping to down size on the > pill box with using the IVIg. I pray that she will > be > able to benefit from it as your daughter did. > > Thank you!! > Diane and Maggie 10 (OI, CP, inflammatory > arthritis, polyarticular JIA, Uveitis) > > --- ' Taunton <lcdanceacademy@...> wrote: > > > Hi Diane, > > My daughter has been on IvIg infusions for 3 years > > now. It works wonderfully for her mild arthritis, > > and severe uveitis. What is wonderful about ivig > is > > that it does not suppress the immune system, in > fact > > it helps you to recover more quickly. There is a > > wonderful website, primary immune deficiency > > syndrome, that has an animation that describes how > > it helps the body to react in a normal way instead > > of attacking the wrong places causing > inflammation. > > > > > > Benefits : it really works. It doesn't suppress > > the immune system. Because of it being an old med, > > insurance usually covers it no questions asked. > > > > The reality of it : It is a long process, feels > > endless sometimes. Because of how thick the > > medicine is, your child needs to drink a lot of > > water. This is so important, because if can help > > her feel better, and avoid nasty headaches that > can > > be a side effect. > > > > My daughter had a port a cath put it when she got > > down to one good vein in her arm. I believe the > > steroids in the beginning took a toll on them. A > > port a cath has saved her from a lot of stress, > and > > has been a blessing. Infusing slowly is important. > > > When my daughter first started her infusions they > > did it over a 3 day period, which is how they > should > > start this process. Don't let them rush you in a > > one day thing. That is a sure fire way of making > > your child sick. My daughter had to double her > dose > > of medication, though, and gets infused over a 5 > day > > period, every 4 weeks. The school provides a tutor > > for her (one hour) during the infusion week. > > > > I probably gave you more info than you wanted. My > > daughter does very well with ivig. She found a > > brand that she does well with, and they have > managed > > to get that for her every month. If one brand > > doesn't work, don't give up, try another. She > > usually gets a headache and fatigued on the Sunday > > after infusions. We just know that is going to be > a > > do nothing day. > > > > Ivig has been my daughters saving grace, and I > > hope it is yours, too. > > > > ' & a 12 jia/uveitis > > > > Diane Wiederholt <hockeytough@...> wrote: > > Good Evening Everyone, > > I guess this message would be for anyone who could > > give me any information on the benefits of IVIg > > infusions for arthritis. > > Maggie had her first infusion this last Tuesday, > > they are using this for two reasons.,First for a > > disease modifier and second to help with > > inflammation. > > I understood the first one but was thrown a bit by > > the > > second. It would be awesome if this works for both > > but > > I have never heard of anyone using it for > arthritis. > > > > Have any of you or your children had success with > > IVIg for inflammation? > > If so how long did it take before you noticed a > > change? > > We seem to be learning something new every day!! > > > > Diane and Maggie 10 (OI,CP,Inflammatory > > Arthritis,Polyarticular JIA,Uveitis) > > > > > __________________________________________________________ > > Never miss a thing. Make your home page. > > http://www./r/hs > > > > > > > > > > > > > > --------------------------------- > > Looking for last minute shopping deals? Find them > > fast with Search. > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > --------------------------------- > Never miss a thing. Make your homepage. > > === message truncated === ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 , We are keeping our fingers crossed. It initially was supposed to be more for immune purposes. She is fighting off yet another infection only this one is bigger than the Pseudomonas bacteria that seems to like to take up residenency in her lungs and even kidneys, she has Active Disseminated Histoplasmosis which is a fungal infection in her bloodstream apparently from bird droppings that are found in the soil in this parts of the Midwest. (never heard of it before now!) Her Rheumatologist was hoping though that she would get some relief for her Arthritis as well. I hope she is right! They have her on a pretty hefty dose right now, but maybe the shots would be something she could go to in the future as well! My fingers are crossed!! Thank you! Diane and Maggie age 10 (OI,CP,inflammatory arthritis, poly JIA, Uveitis) --- nancy barnes <nancyb315@...> wrote: > Diane, > > My daughter has been on IVIG (switched to subQ > application 18 months ago) but for cvid, a Primary > Immune Deficiency. It has not helped with her > arthritis, but obviously it must be beneficial for > some, or it would not be an accepted therapy for > arthritis. > > I do hope it is of great benefit for Maggie!! > > (, 17, poly, cvid, migraines) > > Diane Wiederholt <hockeytough@...> wrote: > Good Evening Everyone, > I guess this message would be for anyone who could > give me any information on the benefits of IVIg > infusions for arthritis. > Maggie had her first infusion this last Tuesday, > they are using this for two reasons.,First for a > disease modifier and second to help with > inflammation. > I understood the first one but was thrown a bit by > the > second. It would be awesome if this works for both > but > I have never heard of anyone using it for > arthritis. > Have any of you or your children had success with > IVIg for inflammation? > If so how long did it take before you noticed a > change? > We seem to be learning something new every day!! > > Diane and Maggie 10 (OI,CP,Inflammatory > Arthritis,Polyarticular JIA,Uveitis) > > > __________________________________________________________ > Never miss a thing. Make your home page. > http://www./r/hs > > > > > > > --------------------------------- > Never miss a thing. Make your homepage. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Diane, how much IVIG did you say Maggie receives each dose? (, 17, poly, cvid, migraines) Diane Wiederholt <hockeytough@...> wrote: , Thank you so much for the info!! She did get a horrible headache after her first infusion and woke up the next morning vomiting. By the next day she was a little bit better and the following night she slept through the night for the first time since December. I think she has seen a glimmer of hope already but not sure if it was from the IVIg, or the increase in oral steroids. (huge flare up right now) They ran the infusion very slow but all in one day, I think it was in about 12 hours. She just spent the night in peds. under 23 hour observation. Maggie has had several port's and PICC lines because of her Pamidronate Infusions she gets for her OI, but ended up with many infections because of it. She is down to one vein on the inside of her wrist that will hold an IV for no more than two days in a row and then blows!! How long does it usually take your daughter to feel the benefit of her infusions? Maggie is on 40mgs of Prednisone daily, 25mgs Methotrexate injection weekly,Steroid eye drops daily, 200mgs of Celebrex daily, and planning to start Humira the first week in March. (these are just her arthritis and uveitis meds) We are hoping to down size on the pill box with using the IVIg. I pray that she will be able to benefit from it as your daughter did. Thank you!! Diane and Maggie 10 (OI, CP, inflammatory arthritis, polyarticular JIA, Uveitis) --- ' Taunton <lcdanceacademy@...> wrote: > Hi Diane, > My daughter has been on IvIg infusions for 3 years > now. It works wonderfully for her mild arthritis, > and severe uveitis. What is wonderful about ivig is > that it does not suppress the immune system, in fact > it helps you to recover more quickly. There is a > wonderful website, primary immune deficiency > syndrome, that has an animation that describes how > it helps the body to react in a normal way instead > of attacking the wrong places causing inflammation. > > > Benefits : it really works. It doesn't suppress > the immune system. Because of it being an old med, > insurance usually covers it no questions asked. > > The reality of it : It is a long process, feels > endless sometimes. Because of how thick the > medicine is, your child needs to drink a lot of > water. This is so important, because if can help > her feel better, and avoid nasty headaches that can > be a side effect. > > My daughter had a port a cath put it when she got > down to one good vein in her arm. I believe the > steroids in the beginning took a toll on them. A > port a cath has saved her from a lot of stress, and > has been a blessing. Infusing slowly is important. > When my daughter first started her infusions they > did it over a 3 day period, which is how they should > start this process. Don't let them rush you in a > one day thing. That is a sure fire way of making > your child sick. My daughter had to double her dose > of medication, though, and gets infused over a 5 day > period, every 4 weeks. The school provides a tutor > for her (one hour) during the infusion week. > > I probably gave you more info than you wanted. My > daughter does very well with ivig. She found a > brand that she does well with, and they have managed > to get that for her every month. If one brand > doesn't work, don't give up, try another. She > usually gets a headache and fatigued on the Sunday > after infusions. We just know that is going to be a > do nothing day. > > Ivig has been my daughters saving grace, and I > hope it is yours, too. > > ' & a 12 jia/uveitis > > Diane Wiederholt <hockeytough@...> wrote: > Good Evening Everyone, > I guess this message would be for anyone who could > give me any information on the benefits of IVIg > infusions for arthritis. > Maggie had her first infusion this last Tuesday, > they are using this for two reasons.,First for a > disease modifier and second to help with > inflammation. > I understood the first one but was thrown a bit by > the > second. It would be awesome if this works for both > but > I have never heard of anyone using it for arthritis. > > Have any of you or your children had success with > IVIg for inflammation? > If so how long did it take before you noticed a > change? > We seem to be learning something new every day!! > > Diane and Maggie 10 (OI,CP,Inflammatory > Arthritis,Polyarticular JIA,Uveitis) > > __________________________________________________________ > Never miss a thing. Make your home page. > http://www./r/hs > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Search. > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ --------------------------------- Looking for last minute shopping deals? Find them fast with Search. 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Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Hi Diane, She receives the infusion at an infusion clinic, and is there for about 4 - 5 hours each day. Blankets, music, homework and a cat nap keeps her busy during this time. 51 mg, is that one bottle? That isn't an awful lot if I understand you correctly. My friend used to receive subq ivig at her home, and it is not with a needle, but rather 3 little prongs that went into her thigh. She could barely feel it, and it was velcroed around her leg. She walked around her house and even forgot it would be there. Definitely something to look into ; ) ' & a 12 jia/uveitis Diane Wiederholt <hockeytough@...> wrote: , Because they are using the IVIg as a disease modifier as well with Maggie, she has had huge infections that she just does not fight even with antibiotics. Becteria just seems to love this kid, she is on a pretty high dose, I want to say 51mgs was what it said on the bottle. I can ask them about splitting up the dose, this may help her. She has been on Prednisone since April when everything went haywire, they rollercoaster the dose but the lowest it has been is 10mgs. She is now on 40mgs because of a recent flare up and it is horrible to wean her from as she notices each 1mg drop. Do you guys do the infusions as out patient or does she stay in the hospital the entire time? Maggie is home schooled and her teacher comes to our house or to the peds unit.......it is awesome for her!! This way she stays caught up and is actually three grade levels ahead! Thanks for the input!! Diane and Maggie age 10 (OI,CP,inflammatory arthritis, Poly JIA, Uveitis) --- ' Taunton <lcdanceacademy@...> wrote: > Diane, > > Would the prescribing Dr. be up to going over a 3 > day period (or even 2 day due to the vein issue) > with infusions vs. a one day? Let them know what > your daughter was experiencing. My daughters gets > extremely sick with steriods. She does not tolerate > oral steroids anymore. The last time they HAD to > use steroids was in a 3 day pulse iv because the > side effects are little compared to taking them > orally. My daughter got pneumonia on Cellcept with > cyclosporine, and on chlorambucil. That is why they > thought ivig would be helpful to her, and it is. > > I think it was by the third month that we actually > saw the benefits from ivig. She has been on it > every since, and hardly ever sick. She is in > medicated durable remission, and we are just looking > for the day to start tapering. I'm a little worried > that the ugly beast will rear its ugly head when > that happens, but I guess I should just enjoy the > now! > > Have her drink water, even flavor it if that > helps. It sounds like they infused slow, but if > they could even add a day to help her body rest. > There is another way that I believe a parent wrote > about. SubQ ivig is amazing for so many people. My > daughter takes too high of a dose to receive it this > way. The side effects are almost nil with it this > way. I encourage you to ask that parent how to go > about it. If my daughter could do this I'd jump on > it. > > ' & a 12 jia/uveitis > > > > Diane Wiederholt <hockeytough@...> wrote: > , > Thank you so much for the info!! > She did get a horrible headache after her first > infusion and woke up the next morning vomiting. By > the next day she was a little bit better and the > following night she slept through the night for the > first time since December. I think she has seen a > glimmer of hope already but not sure if it was from > the IVIg, or the increase in oral steroids. (huge > flare up right now) > They ran the infusion very slow but all in one day, > I think it was in about 12 hours. She just spent the > night in peds. under 23 hour observation. > Maggie has had several port's and PICC lines because > of her Pamidronate Infusions she gets for her OI, > but > ended up with many infections because of it. She is > down to one vein on the inside of her wrist that > will > hold an IV for no more than two days in a row and > then > blows!! > How long does it usually take your daughter to feel > the benefit of her infusions? > Maggie is on 40mgs of Prednisone daily, 25mgs > Methotrexate injection weekly,Steroid eye drops > daily, > 200mgs of Celebrex daily, and planning to start > Humira > the first week in March. (these are just her > arthritis > and uveitis meds) We are hoping to down size on the > pill box with using the IVIg. I pray that she will > be > able to benefit from it as your daughter did. > > Thank you!! > Diane and Maggie 10 (OI, CP, inflammatory > arthritis, polyarticular JIA, Uveitis) > > --- ' Taunton <lcdanceacademy@...> wrote: > > > Hi Diane, > > My daughter has been on IvIg infusions for 3 years > > now. It works wonderfully for her mild arthritis, > > and severe uveitis. What is wonderful about ivig > is > > that it does not suppress the immune system, in > fact > > it helps you to recover more quickly. There is a > > wonderful website, primary immune deficiency > > syndrome, that has an animation that describes how > > it helps the body to react in a normal way instead > > of attacking the wrong places causing > inflammation. > > > > > > Benefits : it really works. It doesn't suppress > > the immune system. Because of it being an old med, > > insurance usually covers it no questions asked. > > > > The reality of it : It is a long process, feels > > endless sometimes. Because of how thick the > > medicine is, your child needs to drink a lot of > > water. This is so important, because if can help > > her feel better, and avoid nasty headaches that > can > > be a side effect. > > > > My daughter had a port a cath put it when she got > > down to one good vein in her arm. I believe the > > steroids in the beginning took a toll on them. A > > port a cath has saved her from a lot of stress, > and > > has been a blessing. Infusing slowly is important. > > > When my daughter first started her infusions they > > did it over a 3 day period, which is how they > should > > start this process. Don't let them rush you in a > > one day thing. That is a sure fire way of making > > your child sick. My daughter had to double her > dose > > of medication, though, and gets infused over a 5 > day > > period, every 4 weeks. The school provides a tutor > > for her (one hour) during the infusion week. > > > > I probably gave you more info than you wanted. My > > daughter does very well with ivig. She found a > > brand that she does well with, and they have > managed > > to get that for her every month. If one brand > > doesn't work, don't give up, try another. She > > usually gets a headache and fatigued on the Sunday > > after infusions. We just know that is going to be > a > > do nothing day. > > > > Ivig has been my daughters saving grace, and I > > hope it is yours, too. > > > > ' & a 12 jia/uveitis > > > > Diane Wiederholt <hockeytough@...> wrote: > > Good Evening Everyone, > > I guess this message would be for anyone who could > > give me any information on the benefits of IVIg > > infusions for arthritis. > > Maggie had her first infusion this last Tuesday, > > they are using this for two reasons.,First for a > > disease modifier and second to help with > > inflammation. > > I understood the first one but was thrown a bit by > > the > > second. It would be awesome if this works for both > > but > > I have never heard of anyone using it for > arthritis. > > > > Have any of you or your children had success with > > IVIg for inflammation? > > If so how long did it take before you noticed a > > change? > > We seem to be learning something new every day!! > > > > Diane and Maggie 10 (OI,CP,Inflammatory > > Arthritis,Polyarticular JIA,Uveitis) > > > > > __________________________________________________________ > > Never miss a thing. Make your home page. > > http://www./r/hs > > > > > > > > > > > > > > --------------------------------- > > Looking for last minute shopping deals? Find them > > fast with Search. > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > --------------------------------- > Never miss a thing. Make your homepage. > > === message truncated === __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Hi , Maybe I am wrong on the dose. It was a huge glass bottle, probably about 1 litre or so. It ran over twelve hours, in fact we thought it would never be done! Our insurance is horrible about home infusion anything. We have tried since she was 5 for her Pamidronate IV Infusions that she gets for her OI and they just will not budge. Our Infusion center here is for adults only, which leaves her out as well. We can however do them in the peds unit as an outpatient which is our goal for next month. We finally got the OI routine down pat but that was pretty cut and dried. If she breaks you cast it.(okay, maybe not quite that simple always, but at least we have an idea) When she needs an infusion every eight weeks it is a two day deal and done. Arthritis is a whole different ball game. I suppose in time I will learn what works best for her as I did the rest of her health issues. One day at a time! Thanks for the info!! Diane and Maggie age 10 (OI, CP, inflammatory arthritis, poly JIA, Uveitis) --- ' Taunton <lcdanceacademy@...> wrote: > Hi Diane, > > She receives the infusion at an infusion clinic, > and is there for about 4 - 5 hours each day. > Blankets, music, homework and a cat nap keeps her > busy during this time. 51 mg, is that one bottle? > That isn't an awful lot if I understand you > correctly. My friend used to receive subq ivig at > her home, and it is not with a needle, but rather 3 > little prongs that went into her thigh. She could > barely feel it, and it was velcroed around her leg. > She walked around her house and even forgot it would > be there. > > Definitely something to look into ; ) > ' & a 12 jia/uveitis > > Diane Wiederholt <hockeytough@...> wrote: > , > Because they are using the IVIg as a disease > modifier as well with Maggie, she has had huge > infections that she just does not fight even with > antibiotics. Becteria just seems to love this kid, > she > is on a pretty high dose, I want to say 51mgs was > what > it said on the bottle. > I can ask them about splitting up the dose, this may > help her. > She has been on Prednisone since April when > everything went haywire, they rollercoaster the dose > but the lowest it has been is 10mgs. She is now on > 40mgs because of a recent flare up and it is > horrible > to wean her from as she notices each 1mg drop. > Do you guys do the infusions as out patient or does > she stay in the hospital the entire time? > Maggie is home schooled and her teacher comes to our > house or to the peds unit.......it is awesome for > her!! This way she stays caught up and is actually > three grade levels ahead! > Thanks for the input!! > Diane and Maggie age 10 (OI,CP,inflammatory > arthritis, Poly JIA, Uveitis) > --- ' Taunton <lcdanceacademy@...> wrote: > > > Diane, > > > > Would the prescribing Dr. be up to going over a 3 > > day period (or even 2 day due to the vein issue) > > with infusions vs. a one day? Let them know what > > your daughter was experiencing. My daughters gets > > extremely sick with steriods. She does not > tolerate > > oral steroids anymore. The last time they HAD to > > use steroids was in a 3 day pulse iv because the > > side effects are little compared to taking them > > orally. My daughter got pneumonia on Cellcept with > > cyclosporine, and on chlorambucil. That is why > they > > thought ivig would be helpful to her, and it is. > > > > I think it was by the third month that we actually > > saw the benefits from ivig. She has been on it > > every since, and hardly ever sick. She is in > > medicated durable remission, and we are just > looking > > for the day to start tapering. I'm a little > worried > > that the ugly beast will rear its ugly head when > > that happens, but I guess I should just enjoy the > > now! > > > > Have her drink water, even flavor it if that > > helps. It sounds like they infused slow, but if > > they could even add a day to help her body rest. > > There is another way that I believe a parent wrote > > about. SubQ ivig is amazing for so many people. My > > daughter takes too high of a dose to receive it > this > > way. The side effects are almost nil with it this > > way. I encourage you to ask that parent how to go > > about it. If my daughter could do this I'd jump on > > it. > > > > ' & a 12 jia/uveitis > > > > > > > > Diane Wiederholt <hockeytough@...> wrote: > > , > > Thank you so much for the info!! > > She did get a horrible headache after her first > > infusion and woke up the next morning vomiting. By > > the next day she was a little bit better and the > > following night she slept through the night for > the > > first time since December. I think she has seen a > > glimmer of hope already but not sure if it was > from > > the IVIg, or the increase in oral steroids. (huge > > flare up right now) > > They ran the infusion very slow but all in one > day, > > I think it was in about 12 hours. She just spent > the > > night in peds. under 23 hour observation. > > Maggie has had several port's and PICC lines > because > > of her Pamidronate Infusions she gets for her OI, > > but > > ended up with many infections because of it. She > is > > down to one vein on the inside of her wrist that > > will > > hold an IV for no more than two days in a row and > > then > > blows!! > > How long does it usually take your daughter to > feel > > the benefit of her infusions? > > Maggie is on 40mgs of Prednisone daily, 25mgs > > Methotrexate injection weekly,Steroid eye drops > > daily, > > 200mgs of Celebrex daily, and planning to start > > Humira > > the first week in March. (these are just her > > arthritis > > and uveitis meds) We are hoping to down size on > the > > pill box with using the IVIg. I pray that she will > > be > > able to benefit from it as your daughter did. > > > > Thank you!! > > Diane and Maggie 10 (OI, CP, inflammatory > > arthritis, polyarticular JIA, Uveitis) > > > > --- ' Taunton <lcdanceacademy@...> > wrote: > > > > > Hi Diane, > > > My daughter has been on IvIg infusions for 3 > years > > > now. It works wonderfully for her mild > arthritis, > > > and severe uveitis. What is wonderful about ivig > > is > > > that it does not suppress the immune system, in > > fact > > > it helps you to recover more quickly. There is a > > > wonderful website, primary immune deficiency > > > syndrome, that has an animation that describes > how > > > it helps the body to react in a normal way > instead > > > of attacking the wrong places causing > > inflammation. > > > > > > > > > Benefits : it really works. It doesn't suppress > > > the immune system. Because of it being an old > med, > > > insurance usually covers it no questions asked. > > > > > > The reality of it : It is a long process, feels > > > endless sometimes. Because of how thick the > > > medicine is, your child needs to drink a lot of > > > water. This is so important, because if can help > > > her feel better, and avoid nasty headaches that > > can > > > be a side effect. > > > > > > My daughter had a port a cath put it when she > got > > > down to one good vein in her arm. I believe the > > > steroids in the beginning took a toll on them. A > > > port a cath has saved her from a lot of stress, > > and > > > has been a blessing. Infusing slowly is > important. > > > > > When my daughter first started her infusions > they > > > did it over a 3 day period, which is how they > > should > > > start this process. Don't let them rush you in a > > > one day thing. That is a sure fire way of making > > > your child sick. My daughter had to double her > > dose > > > of medication, though, and gets infused over a 5 > > day > > > period, every 4 weeks. The school provides a > tutor > > > for her (one hour) during the infusion week. > > > > > > I probably gave you more info than you wanted. > My > > > daughter does very well with ivig. She found a > > > brand that she does well with, and they have > > managed > === message truncated === ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Hi , I thought it was 51mgs but I could be very wrong with that. It was her first infusion last Tuesday and what I can tell you was the bottle was huge and took 12 hours to infuse. They took vital signs about every 30 minutes, this kind of freaked her out a bit and she kept asking if this stuff could kill her or something. (I am guessing this is routine?) I know the nurses here in town were amazed at the amount she as getting but these nurses mainly deal with IVIg for Kawasaki syndrome. Because the childrens hospital of Iowa is an hour drive from here we choose to do them in our local hospital so we are not so far from home. She is going back next week for steroid injections in both hips so I can ask while we are there. She did very well, had a horrible headache and vomited the next morning but then seemed ok by that evening. Diane and Maggie --- nancy barnes <nancyb315@...> wrote: > Diane, > > how much IVIG did you say Maggie receives each > dose? > > (, 17, poly, cvid, migraines) > > Diane Wiederholt <hockeytough@...> wrote: > , > Thank you so much for the info!! > She did get a horrible headache after her first > infusion and woke up the next morning vomiting. By > the next day she was a little bit better and the > following night she slept through the night for the > first time since December. I think she has seen a > glimmer of hope already but not sure if it was from > the IVIg, or the increase in oral steroids. (huge > flare up right now) > They ran the infusion very slow but all in one > day, > I think it was in about 12 hours. She just spent > the > night in peds. under 23 hour observation. > Maggie has had several port's and PICC lines > because > of her Pamidronate Infusions she gets for her OI, > but > ended up with many infections because of it. She > is > down to one vein on the inside of her wrist that > will > hold an IV for no more than two days in a row and > then > blows!! > How long does it usually take your daughter to > feel > the benefit of her infusions? > Maggie is on 40mgs of Prednisone daily, 25mgs > Methotrexate injection weekly,Steroid eye drops > daily, > 200mgs of Celebrex daily, and planning to start > Humira > the first week in March. (these are just her > arthritis > and uveitis meds) We are hoping to down size on > the > pill box with using the IVIg. I pray that she will > be > able to benefit from it as your daughter did. > > Thank you!! > Diane and Maggie 10 (OI, CP, inflammatory > arthritis, polyarticular JIA, Uveitis) > > --- ' Taunton <lcdanceacademy@...> > wrote: > > > Hi Diane, > > My daughter has been on IvIg infusions for 3 > years > > now. It works wonderfully for her mild > arthritis, > > and severe uveitis. What is wonderful about ivig > is > > that it does not suppress the immune system, in > fact > > it helps you to recover more quickly. There is a > > wonderful website, primary immune deficiency > > syndrome, that has an animation that describes > how > > it helps the body to react in a normal way > instead > > of attacking the wrong places causing > inflammation. > > > > > > Benefits : it really works. It doesn't > suppress > > the immune system. Because of it being an old > med, > > insurance usually covers it no questions asked. > > > > The reality of it : It is a long process, feels > > endless sometimes. Because of how thick the > > medicine is, your child needs to drink a lot of > > water. This is so important, because if can help > > her feel better, and avoid nasty headaches that > can > > be a side effect. > > > > My daughter had a port a cath put it when she > got > > down to one good vein in her arm. I believe the > > steroids in the beginning took a toll on them. A > > port a cath has saved her from a lot of stress, > and > > has been a blessing. Infusing slowly is > important. > > When my daughter first started her infusions they > > did it over a 3 day period, which is how they > should > > start this process. Don't let them rush you in a > > one day thing. That is a sure fire way of making > > your child sick. My daughter had to double her > dose > > of medication, though, and gets infused over a 5 > day > > period, every 4 weeks. The school provides a > tutor > > for her (one hour) during the infusion week. > > > > I probably gave you more info than you wanted. > My > > daughter does very well with ivig. She found a > > brand that she does well with, and they have > managed > > to get that for her every month. If one brand > > doesn't work, don't give up, try another. She > > usually gets a headache and fatigued on the > Sunday > > after infusions. We just know that is going to > be a > > do nothing day. > > > > Ivig has been my daughters saving grace, and I > > hope it is yours, too. > > > > ' & a 12 jia/uveitis > > > > Diane Wiederholt <hockeytough@...> wrote: > > Good Evening Everyone, > > I guess this message would be for anyone who > could > > give me any information on the benefits of IVIg > > infusions for arthritis. > > Maggie had her first infusion this last Tuesday, > > they are using this for two reasons.,First for a > > disease modifier and second to help with > > inflammation. > > I understood the first one but was thrown a bit > by > > the > > second. It would be awesome if this works for > both > > but > > I have never heard of anyone using it for > arthritis. > > > > Have any of you or your children had success with > > IVIg for inflammation? > > If so how long did it take before you noticed a > > change? > > We seem to be learning something new every day!! > > > > Diane and Maggie 10 (OI,CP,Inflammatory > > Arthritis,Polyarticular JIA,Uveitis) > > > > > > __________________________________________________________ > > Never miss a thing. Make your home page. > > http://www./r/hs > > > > > > > > > > > > > > --------------------------------- > > Looking for last minute shopping deals? Find > them > > fast with Search. > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________________ > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Search. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 Insurance can make it tough, I understand that completely. I just got on to see if you wrote back, and read what you wrote about checking vitals every 30 minutes. Yes that is what they do with my daughter, too. If her blood pressure goes up, they decrease the rate of infusion. Hang in there. I think its quite a process to find exactly what works for each person, including what dose. You and your daughter are in my thoughts! ' & a 12 jia/uveitis Diane Wiederholt <hockeytough@...> wrote: Hi , Maybe I am wrong on the dose. It was a huge glass bottle, probably about 1 litre or so. It ran over twelve hours, in fact we thought it would never be done! Our insurance is horrible about home infusion anything. We have tried since she was 5 for her Pamidronate IV Infusions that she gets for her OI and they just will not budge. Our Infusion center here is for adults only, which leaves her out as well. We can however do them in the peds unit as an outpatient which is our goal for next month. We finally got the OI routine down pat but that was pretty cut and dried. If she breaks you cast it.(okay, maybe not quite that simple always, but at least we have an idea) When she needs an infusion every eight weeks it is a two day deal and done. Arthritis is a whole different ball game. I suppose in time I will learn what works best for her as I did the rest of her health issues. One day at a time! Thanks for the info!! Diane and Maggie age 10 (OI, CP, inflammatory arthritis, poly JIA, Uveitis) --- ' Taunton <lcdanceacademy@...> wrote: > Hi Diane, > > She receives the infusion at an infusion clinic, > and is there for about 4 - 5 hours each day. > Blankets, music, homework and a cat nap keeps her > busy during this time. 51 mg, is that one bottle? > That isn't an awful lot if I understand you > correctly. My friend used to receive subq ivig at > her home, and it is not with a needle, but rather 3 > little prongs that went into her thigh. She could > barely feel it, and it was velcroed around her leg. > She walked around her house and even forgot it would > be there. > > Definitely something to look into ; ) > ' & a 12 jia/uveitis > > Diane Wiederholt <hockeytough@...> wrote: > , > Because they are using the IVIg as a disease > modifier as well with Maggie, she has had huge > infections that she just does not fight even with > antibiotics. Becteria just seems to love this kid, > she > is on a pretty high dose, I want to say 51mgs was > what > it said on the bottle. > I can ask them about splitting up the dose, this may > help her. > She has been on Prednisone since April when > everything went haywire, they rollercoaster the dose > but the lowest it has been is 10mgs. She is now on > 40mgs because of a recent flare up and it is > horrible > to wean her from as she notices each 1mg drop. > Do you guys do the infusions as out patient or does > she stay in the hospital the entire time? > Maggie is home schooled and her teacher comes to our > house or to the peds unit.......it is awesome for > her!! This way she stays caught up and is actually > three grade levels ahead! > Thanks for the input!! > Diane and Maggie age 10 (OI,CP,inflammatory > arthritis, Poly JIA, Uveitis) > --- ' Taunton <lcdanceacademy@...> wrote: > > > Diane, > > > > Would the prescribing Dr. be up to going over a 3 > > day period (or even 2 day due to the vein issue) > > with infusions vs. a one day? Let them know what > > your daughter was experiencing. My daughters gets > > extremely sick with steriods. She does not > tolerate > > oral steroids anymore. The last time they HAD to > > use steroids was in a 3 day pulse iv because the > > side effects are little compared to taking them > > orally. My daughter got pneumonia on Cellcept with > > cyclosporine, and on chlorambucil. That is why > they > > thought ivig would be helpful to her, and it is. > > > > I think it was by the third month that we actually > > saw the benefits from ivig. She has been on it > > every since, and hardly ever sick. She is in > > medicated durable remission, and we are just > looking > > for the day to start tapering. I'm a little > worried > > that the ugly beast will rear its ugly head when > > that happens, but I guess I should just enjoy the > > now! > > > > Have her drink water, even flavor it if that > > helps. It sounds like they infused slow, but if > > they could even add a day to help her body rest. > > There is another way that I believe a parent wrote > > about. SubQ ivig is amazing for so many people. My > > daughter takes too high of a dose to receive it > this > > way. The side effects are almost nil with it this > > way. I encourage you to ask that parent how to go > > about it. If my daughter could do this I'd jump on > > it. > > > > ' & a 12 jia/uveitis > > > > > > > > Diane Wiederholt <hockeytough@...> wrote: > > , > > Thank you so much for the info!! > > She did get a horrible headache after her first > > infusion and woke up the next morning vomiting. By > > the next day she was a little bit better and the > > following night she slept through the night for > the > > first time since December. I think she has seen a > > glimmer of hope already but not sure if it was > from > > the IVIg, or the increase in oral steroids. (huge > > flare up right now) > > They ran the infusion very slow but all in one > day, > > I think it was in about 12 hours. She just spent > the > > night in peds. under 23 hour observation. > > Maggie has had several port's and PICC lines > because > > of her Pamidronate Infusions she gets for her OI, > > but > > ended up with many infections because of it. She > is > > down to one vein on the inside of her wrist that > > will > > hold an IV for no more than two days in a row and > > then > > blows!! > > How long does it usually take your daughter to > feel > > the benefit of her infusions? > > Maggie is on 40mgs of Prednisone daily, 25mgs > > Methotrexate injection weekly,Steroid eye drops > > daily, > > 200mgs of Celebrex daily, and planning to start > > Humira > > the first week in March. (these are just her > > arthritis > > and uveitis meds) We are hoping to down size on > the > > pill box with using the IVIg. I pray that she will > > be > > able to benefit from it as your daughter did. > > > > Thank you!! > > Diane and Maggie 10 (OI, CP, inflammatory > > arthritis, polyarticular JIA, Uveitis) > > > > --- ' Taunton <lcdanceacademy@...> > wrote: > > > > > Hi Diane, > > > My daughter has been on IvIg infusions for 3 > years > > > now. It works wonderfully for her mild > arthritis, > > > and severe uveitis. What is wonderful about ivig > > is > > > that it does not suppress the immune system, in > > fact > > > it helps you to recover more quickly. There is a > > > wonderful website, primary immune deficiency > > > syndrome, that has an animation that describes > how > > > it helps the body to react in a normal way > instead > > > of attacking the wrong places causing > > inflammation. > > > > > > > > > Benefits : it really works. It doesn't suppress > > > the immune system. Because of it being an old > med, > > > insurance usually covers it no questions asked. > > > > > > The reality of it : It is a long process, feels > > > endless sometimes. Because of how thick the > > > medicine is, your child needs to drink a lot of > > > water. This is so important, because if can help > > > her feel better, and avoid nasty headaches that > > can > > > be a side effect. > > > > > > My daughter had a port a cath put it when she > got > > > down to one good vein in her arm. I believe the > > > steroids in the beginning took a toll on them. A > > > port a cath has saved her from a lot of stress, > > and > > > has been a blessing. Infusing slowly is > important. > > > > > When my daughter first started her infusions > they > > > did it over a 3 day period, which is how they > > should > > > start this process. Don't let them rush you in a > > > one day thing. That is a sure fire way of making > > > your child sick. My daughter had to double her > > dose > > > of medication, though, and gets infused over a 5 > > day > > > period, every 4 weeks. The school provides a > tutor > > > for her (one hour) during the infusion week. > > > > > > I probably gave you more info than you wanted. > My > > > daughter does very well with ivig. She found a > > > brand that she does well with, and they have > > managed > === message truncated === __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 ' Oh awesome I will tell Maggie to ease her mind, they are not trying to kill her off, just watching her close to make sure she is ok. She was also concerned (being 10 and allergic to latex, bananna's and Kiwi) that if someone ate a bananna and then donated blood used for IVIg that she somehow would have an allergic reaction! Her doctor had to promise her that it was in powder form before she got it and there was no way that any trace of bananna was in there. I think the whole if it can go wrong it has gone wrong in her life has taken a toll on her! She is not taking ANY chances!! She has already had two blood transfusions in the last year, must not have had bananna's in those either because she did just fine!! She keeps me young and makes me old all at the same time! Thanks Again, Diane and Maggie (OI,CP, inflammatory arthritis, Poly JIA, Uveitis) --- ' Taunton <lcdanceacademy@...> wrote: > Insurance can make it tough, I understand that > completely. I just got on to see if you wrote back, > and read what you wrote about checking vitals every > 30 minutes. Yes that is what they do with my > daughter, too. If her blood pressure goes up, they > decrease the rate of infusion. > > Hang in there. I think its quite a process to > find exactly what works for each person, including > what dose. You and your daughter are in my > thoughts! > > ' & a 12 jia/uveitis > > Diane Wiederholt <hockeytough@...> wrote: > Hi , > Maybe I am wrong on the dose. It was a huge glass > bottle, probably about 1 litre or so. It ran over > twelve hours, in fact we thought it would never be > done! > Our insurance is horrible about home infusion > anything. We have tried since she was 5 for her > Pamidronate IV Infusions that she gets for her OI > and > they just will not budge. Our Infusion center here > is > for adults only, which leaves her out as well. We > can > however do them in the peds unit as an outpatient > which is our goal for next month. We finally got the > OI routine down pat but that was pretty cut and > dried. > If she breaks you cast it.(okay, maybe not quite > that > simple always, but at least we have an idea) When > she > needs an infusion every eight weeks it is a two day > deal and done. > Arthritis is a whole different ball game. I suppose > in time I will learn what works best for her as I > did > the rest of her health issues. > One day at a time! > > Thanks for the info!! > Diane and Maggie age 10 (OI, CP, inflammatory > arthritis, poly JIA, Uveitis) > --- ' Taunton <lcdanceacademy@...> wrote: > > > Hi Diane, > > > > She receives the infusion at an infusion clinic, > > and is there for about 4 - 5 hours each day. > > Blankets, music, homework and a cat nap keeps her > > busy during this time. 51 mg, is that one bottle? > > That isn't an awful lot if I understand you > > correctly. My friend used to receive subq ivig at > > her home, and it is not with a needle, but rather > 3 > > little prongs that went into her thigh. She could > > barely feel it, and it was velcroed around her > leg. > > She walked around her house and even forgot it > would > > be there. > > > > Definitely something to look into ; ) > > ' & a 12 jia/uveitis > > > > Diane Wiederholt <hockeytough@...> wrote: > > , > > Because they are using the IVIg as a disease > > modifier as well with Maggie, she has had huge > > infections that she just does not fight even with > > antibiotics. Becteria just seems to love this kid, > > she > > is on a pretty high dose, I want to say 51mgs was > > what > > it said on the bottle. > > I can ask them about splitting up the dose, this > may > > help her. > > She has been on Prednisone since April when > > everything went haywire, they rollercoaster the > dose > > but the lowest it has been is 10mgs. She is now on > > 40mgs because of a recent flare up and it is > > horrible > > to wean her from as she notices each 1mg drop. > > Do you guys do the infusions as out patient or > does > > she stay in the hospital the entire time? > > Maggie is home schooled and her teacher comes to > our > > house or to the peds unit.......it is awesome for > > her!! This way she stays caught up and is actually > > three grade levels ahead! > > Thanks for the input!! > > Diane and Maggie age 10 (OI,CP,inflammatory > > arthritis, Poly JIA, Uveitis) > > --- ' Taunton <lcdanceacademy@...> > wrote: > > > > > Diane, > > > > > > Would the prescribing Dr. be up to going over a > 3 > > > day period (or even 2 day due to the vein issue) > > > > with infusions vs. a one day? Let them know what > > > your daughter was experiencing. My daughters > gets > > > extremely sick with steriods. She does not > > tolerate > > > oral steroids anymore. The last time they HAD to > > > use steroids was in a 3 day pulse iv because the > > > side effects are little compared to taking them > > > orally. My daughter got pneumonia on Cellcept > with > > > cyclosporine, and on chlorambucil. That is why > > they > > > thought ivig would be helpful to her, and it is. > > > > > > I think it was by the third month that we > actually > > > saw the benefits from ivig. She has been on it > > > every since, and hardly ever sick. She is in > > > medicated durable remission, and we are just > > looking > > > for the day to start tapering. I'm a little > > worried > > > that the ugly beast will rear its ugly head when > > > that happens, but I guess I should just enjoy > the > > > now! > > > > > > Have her drink water, even flavor it if that > > > helps. It sounds like they infused slow, but if > > > they could even add a day to help her body rest. > > > > There is another way that I believe a parent > wrote > > > about. SubQ ivig is amazing for so many people. > My > > > daughter takes too high of a dose to receive it > > this > > > way. The side effects are almost nil with it > this > > > way. I encourage you to ask that parent how to > go > > > about it. If my daughter could do this I'd jump > on > > > it. > > > > > > ' & a 12 jia/uveitis > > > > > > > > > > > > Diane Wiederholt <hockeytough@...> wrote: > > > , > > > Thank you so much for the info!! > > > She did get a horrible headache after her first > > > infusion and woke up the next morning vomiting. > By > > > the next day she was a little bit better and the > > > following night she slept through the night for > > the > > > first time since December. I think she has seen > a > > > glimmer of hope already but not sure if it was > > from > > > the IVIg, or the increase in oral steroids. > (huge > > > flare up right now) > > > They ran the infusion very slow but all in one > > day, > > > I think it was in about 12 hours. She just spent > > the > > > night in peds. under 23 hour observation. > > > Maggie has had several port's and PICC lines > > because > > > of her Pamidronate Infusions she gets for her > OI, > > > but > > > ended up with many infections because of it. She > > is > > > down to one vein on the inside of her wrist that > > > will > > > hold an IV for no more than two days in a row > and > > > then > > > blows!! > > > How long does it usually take your daughter to > > feel > > > the benefit of her infusions? > > > Maggie is on 40mgs of Prednisone daily, 25mgs > > > Methotrexate injection weekly,Steroid eye drops > > > daily, > > > 200mgs of Celebrex daily, and planning to start > > > Humira > > > the first week in March. (these are just her > === message truncated === ________________________________________________________________________________\ ____ Looking for last minute shopping deals? 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Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 "Am looking for current information about the availability vs.non-availability of intravenous immunoglobulin for use withalleviating peripheral neuropathy. Thank you."It's a great way to get an MD investigated by the government.JB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 "Am looking for current information about the availability vs.non-availability of intravenous immunoglobulin for use withalleviating peripheral neuropathy. Thank you."It's a great way to get an MD investigated by the government.JB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2009 Report Share Posted November 28, 2009 Arlene, I agree that it makes sense to be tested again before any mew meds are prescribed. I have no idea whether IVIG can bump up cholesterol levels but the test sure sounds like a fluke considering your history and lifestyle. I assume you fasted before this test since recent meals can influence the results. Best, Fred Hummel, 83, Arcata CA, DX 1/98 Fludara 2000;Fludara, Rituxan, Novantrone & Decadron 2002;Rituxan 2004; Rituxan & Leukeran 2005, 2006;IVIG 2007; RFC Lite 2007. Now doing R & Treanda. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2010 Report Share Posted April 28, 2010 I've been on monthly IVIG for over a year, as I have a chronic lung infection (Pseudomonas Aeruginosa, 2 yrs, controlled with Tobi and Cipro) and some sinusitis (controlled with NeilMed). The first IVIG had Tylenol and Benadryl as premed, IVIG started at 4.5 gr/hr, then 9, then 13.5, then it got exciting with severe shaking/shivering and lower back pain. Tx was 2 units of IV Demerol, oxygen, and a hot blanket. My onc and I decided on holding the infusion rate to 9 gr/hr (90 ml/hr 10% sol'n) and a total of 20 gr. (The range for my size is 20-80 gr.) He added hydrocortisone to the premed mix. Since then the IVIG has been uneventful, and I sleep it off for a couple of hours when I come home. No other infections since I started, CBCs are normal, and I feel fine. I've been in remission (SLL) for 4+ years. For what it's worth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2010 Report Share Posted May 1, 2010 Thank you Cathi, Beverly, Pat, , and Balgegil for responding to my question about IVIG. I had my infusion on Thursday, without any premeds as far as I know. I had no negative reaction that day, but felt fatigued and had a headache yesterday. I am glad to hear that it is not something one has to continue forever, but can get on an as needed basis. Perhaps I can stop once I know thar my Microbacterium avium complex infection is gone. I will be on antibiotics for another 9 months or more for that, but the IVIG may keep it from reocurring. I will have another blood test to see how my immune system is responding in mid June. Bente ________________________________ From: on behalf of Cathi Coridan Sent: Tue 4/27/2010 10:29 AM Subject: RE: Colds and bronchitis,IVIG Hi Bente - I have had 2 - they have been marginally helpful and I have a dr appt this afternoon to discuss whether I will continue - be aware that they give you both Benadryl and Dexedrine before the infusion and some steroids in the soup -- you probably should have someone drive you home as I was pretty loopy! I also had some sleep disruption for a few days afterward - very uneven sleeping - naps and then up in the middle of the night. For me it was prob the steroids. Good luck tomorrow! Cathi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2010 Report Share Posted December 21, 2010 "Good luck trying to get it or having insurance pay for it. It costs almost$4000 per dose and people have gone to jail for fraud"Absolutely. While this study is interesting, numbers of doctors have gotten in trouble with medicare, which has come back at them for repayment of unproved, ineffective therapy.In Florida's thriving medicare rip off clinics, IVIG was a big profit center. IVIG is not currently considered to be of any therapeutic benefit.JB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2010 Report Share Posted December 21, 2010 "Good luck trying to get it or having insurance pay for it. It costs almost$4000 per dose and people have gone to jail for fraud"Absolutely. While this study is interesting, numbers of doctors have gotten in trouble with medicare, which has come back at them for repayment of unproved, ineffective therapy.In Florida's thriving medicare rip off clinics, IVIG was a big profit center. IVIG is not currently considered to be of any therapeutic benefit.JB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 Have you stopped eating gluten, sugar, and dairy. This is VERY important. Are you taking vitamins, minerals, other support supplements. Also VERY important. Give the body the best fuel you can to help it take on the enormous task of getting well. Good luck! Connie [ ] IVIG HI, I'm new here and could REALLY use some advice! Has anyone had any luck with IVIG? I'm desperate and considering giving it a try - CD57 is 28, I'm hoping this would boost my immune system enough to tolerate antibiotics. Had Lyme over 20 years - living in the ER the past 3 1/2, but just diagnosed this summer. Cannot tolerate antibiotics right now at all and recently started the Buhner protocol - very low level, scared to herx. I've tried oral abx a few times and each time I crash within a couple weeks - can't walk, talk, swallow - I really can't believe I'm still here. Crossing my fingers that I can make some progress with Buhner! Any advice you could give me would be great. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 I eat yeast free and 95% gluten and dairy free too. I would be spinning for hours if I ate half a cookie! So unfair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2011 Report Share Posted January 22, 2011 Jenna of Jenna's Blog (www.lymediseaseresource.com) may have firsthand knowledge of it. You can check out her web site and there is a link at very bottom right where you can contact her. deb > > HI, > I'm new here and could REALLY use some advice! > > Has anyone had any luck with IVIG? I'm desperate and considering giving it a try - CD57 is 28, I'm hoping this would boost my immune system enough to tolerate antibiotics. Had Lyme over 20 years - living in the ER the past 3 1/2, but just diagnosed this summer. Cannot tolerate antibiotics right now at all and recently started the Buhner protocol - very low level, scared to herx. I've tried oral abx a few times and each time I crash within a couple weeks - can't walk, talk, swallow - I really can't believe I'm still here. > > Crossing my fingers that I can make some progress with Buhner! Any advice you could give me would be great. > Thank you! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2011 Report Share Posted January 22, 2011 It depends...(terrible annoying answer I know) I went to see the GURU in 2004 and heard wonderful things & some folks have improved. I, however never saw any improvement after 5 months & did not see much improvement in others next to me. Hopefully it is working for Jenna. Jazzman [ ] Re: IVIG Jenna of Jenna's Blog (www.lymediseaseresource.com) may have firsthand knowledge of it. You can check out her web site and there is a link at very bottom right where you can contact her. deb > > HI, > I'm new here and could REALLY use some advice! > > Has anyone had any luck with IVIG? I'm desperate and considering giving it a try - CD57 is 28, I'm hoping this would boost my immune system enough to tolerate antibiotics. Had Lyme over 20 years - living in the ER the past 3 1/2, but just diagnosed this summer. Cannot tolerate antibiotics right now at all and recently started the Buhner protocol - very low level, scared to herx. I've tried oral abx a few times and each time I crash within a couple weeks - can't walk, talk, swallow - I really can't believe I'm still here. > > Crossing my fingers that I can make some progress with Buhner! Any advice you could give me would be great. > Thank you! > Quote Link to comment Share on other sites More sharing options...
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