Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Dear Emma, I'm so sorry to hear of your awful experience with IVIG. I am the person who responded that I had been receiving it for 12 years, and it had worked wonders for me. I am so sorry if my experience affected your decision. Could you tell me which brand of IVIG you had? I want to be sure to avoid it in the future. I have found differences between the brands. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Dear Emma, I'm so sorry to hear of your awful experience with IVIG. I am the person who responded that I had been receiving it for 12 years, and it had worked wonders for me. I am so sorry if my experience affected your decision. Could you tell me which brand of IVIG you had? I want to be sure to avoid it in the future. I have found differences between the brands. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2007 Report Share Posted March 29, 2007 It was Gammagard SD by Baxter. It was a high dose and fast infusion rate- 60 grams in three hours, 2 days in a row, and I was a bit dehydrated. I also read that aseptic meningitis occurs mostly in people with a history of migraine, which I have. Glad it has worked for you, and hope it continues to! Emma ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2007 Report Share Posted March 29, 2007 Wow, that sounds like a lot really fast. I get 45 grams over 12 hours once every 4 weeks. I think if I got it in 3 or 4 hours, I would end up in the hospital too. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 When I was on IVIG I got 30 grams over a course of 6-8 hours, every three weeks. If my insurance would pay for it again, the dr told me he would give me 10 grams every week for three weeks and then get a break--not sure for how long. My dr was excellent with administering the IVIG in his office and do it slowly so the reaction would not be as severe. I'd end up in the hospital too if I had it like it was given to you! Carol E from NY Re: rheumatic IVIG Wow, that sounds like a lot really fast. I get 45 grams over 12 hours once every 4 weeks. I think if I got it in 3 or 4 hours, I would end up in the hospital too. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 Is this IVIG the same drug as Octagan...........the IV drug immuglobulin? Lynn S ( SD for 6 years) -- Re: rheumatic IVIG It was Gammagard SD by Baxter. It was a high dose and fast infusion rate- 60 grams in three hours, 2 days in a row, and I was a bit dehydrated. I also read that aseptic meningitis occurs mostly in people with a history of migraine, which I have. Glad it has worked for you, and hope it continues to! Emma ************************************** See what's free at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 -- Re: rheumatic IVIG It was Gammagard SD by Baxter. It was a high dose and fast infusion rate- 60 grams in three hours, 2 days in a row, and I was a bit dehydrated. I also read that aseptic meningitis occurs mostly in people with a history of migraine, which I have. Glad it has worked for you, and hope it continues to! Emma ************************************** See what's free at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 Dear Emma Just googled IVIG and it is the same immuglobulin I have been receiving for a year now every 3 months .and have been suffering from the same aspetic mengatisis ..it is awful I really suffer with it, I have total 90grams of octagan spread over 3 days in hospital. Which is 30 grams a day over a period 6 hrs............. I AM HAPPY I have found some one else who has the same side effects,FROM THE ivig AS THE DRS JUST SAY IT IS ONE OF THE SIDE FFECTS AND JUST DO NOT SAY MUCH AS THEY DONT HAVE THE PROBLEMS WITH OTHER PATIENTS ON IT AND SEND ME HOME,. THEY SAY IT BETTER I AM SICK IN MY OWN HOME...........I LIVE IN ENGLAND BTW I can relate to how awful u must have suffered.........and nothing seems to help the pain or stop the vomiting. In fact I had my last dose last week. Then it lasts for 24 hrs and then I am ok....... 24 hrs after the 3rd day the symptons come on....even after strong anti naeusous medication and tramadol pain killers ,before the symptons come on, I still end up vomiting and that migrane........ But on the other side of the coin, I have really repeaped the benefits of it i.e. My mobility has improved tremendously.......as I have severe SD in my skin and muscles But after reading up the aspetic menangitis on the net,it mentions inflamation of the brain, I thnk I will give this treament a miss in future, and stick to the AP and MTX I have been on for a year. Lynn S -- rheumatic IVIG Dear Friends, I had asked for advice on IVIG a couple weeks ago. So far I've done only AP and " alternative " methods. I've been feeling great, perfect, and thought it very unnecessary to try the IVIG when I was doing so well. Against my best instincts I had two infusions last week, because insurance authorization for it was about to run out. I ended up in the hospital with very severe aseptic meningitis- temperature on the infusion day was 97, went up to 103 in the hospital. I lost 7 pounds in five days and had to have a lumbar puncture. THe meningitis was the most excruciating pain I've ever had. And now that I'm out, I don't feel well again, I'm flaring... I ruined my remission with this fiasco... I just want to reaffirm for every one, if you CAN get away with only the AP and natural methods, DO it. Don't mess with a good thing or look for a quicker fix. I have deep regrets about this incident and feel that I have finally lost my innocence as a patient. I wish I could take it back. Love and health and best wishes to all, Emma ************************************** AOL now offers free email to everyone Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2007 Report Share Posted March 31, 2007 Hi Carol, Hope u don't mind me e ialing u direct. I note u also have the IVIG Do u get the 30g of iv a wek and then 3 weeks later??? I have 30g day run over 6 to 8 hrs of IVIG for 3 days consequtive every 3 months. I live in England so the only IVIG avail is OCTAGAN which is imported from America anyway. I do suffer after the total of 90 g awful and get that menagantisis symptoms anyway......nasty vomiting and migrane, do u not GE these symptoms? How long have u had this treament> I have had it for a year and rally feel the benefits in my mobility as I have severe SD in my skin and muscles. Lynn S from London -- Re: rheumatic IVIG When I was on IVIG I got 30 grams over a course of 6-8 hours, every three weeks. If my insurance would pay for it again, the dr told me he would give me 10 grams every week for three weeks and then get a break--not sure for how long. My dr was excellent with administering the IVIG in his office and do it slowly so the reaction would not be as severe. I'd end up in the hospital too if I had it like it was given to you! Carol E from NY Re: rheumatic IVIG Wow, that sounds like a lot really fast. I get 45 grams over 12 hours once every 4 weeks. I think if I got it in 3 or 4 hours, I would end up in the hospital too. ************************************** See what's free at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2007 Report Share Posted March 31, 2007 I am not the person you were writing to, but I wanted to say I also get the IVIG and have for 12 years now. It has helped me a lot. I have found through trial and error that what works best for me is 45 grams given over 12 hours every 4 weeks. If it is faster than this I get the headache and sick feeling. I also get benadryl (IM) at the beginning and again 6 hours into the treatment. Then at the end I get a shot of lasix. I also get another shot of lasix 2 days after the treatment. This method has really eliminated the side effects for me. I have tried doing it over two days and felt awful. I also tried half every two weeks and felt awful. The method seems to really affect how I feel afterward. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2007 Report Share Posted March 31, 2007 Isn't it great that you can nullify pain with these substances? And if that's the approach that suits you, then so be it - it's your life and you have the right to do with it what you will. My background affords me the opportunity of teaching those who come to me with dealing with the causes of symptom complexes and dealing with those causes as opposed to what you're doing, suppressing the effects. When causation is removed, if the damage hasn't already become too servere, the effects will dissipate over time as the body heals itself. This is an educational process which puts you in control of your own health destiny free from outside treatments or substances. It's my opinion that if you are an elderly person that you will probably be better off just continuing with what you've been doing for twelve years but if you are in your 50s or younger, you may want to think about taking this, the nutritional approach since it would probably bode well for better health for many years to come. If you would like, email me your regular mailing address and I will send you some information. Yours in health, Jack njteabag@... wrote: I am not the person you were writing to, but I wanted to say I also get the IVIG and have for 12 years now. It has helped me a lot. I have found through trial and error that what works best for me is 45 grams given over 12 hours every 4 weeks. If it is faster than this I get the headache and sick feeling. I also get benadryl (IM) at the beginning and again 6 hours into the treatment. Then at the end I get a shot of lasix. I also get another shot of lasix 2 days after the treatment. This method has really eliminated the side effects for me. I have tried doing it over two days and felt awful. I also tried half every two weeks and felt awful. The method seems to really affect how I feel afterward. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Thank you very much for this advise. I will certainly give this regime a try.....phew what a relief, as I was really not looking forward to my next treatment. Blessings Lynn -- Re: rheumatic IVIG I am not the person you were writing to, but I wanted to say I also get the IVIG and have for 12 years now. It has helped me a lot. I have found through trial and error that what works best for me is 45 grams given over 12 hours every 4 weeks. If it is faster than this I get the headache and sick feeling. I also get benadryl (IM) at the beginning and again 6 hours into the treatment. Then at the end I get a shot of lasix. I also get another shot of lasix 2 days after the treatment. This method has really eliminated the side effects for me. I have tried doing it over two days and felt awful. I also tried half every two weeks and felt awful. The method seems to really affect how I feel afterward. ************************************** See what's free at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Here is my address so you can send me information as well. Josie Bradshaw 908 Forest Hill Ct. Cedar Hill Tx.75014 Jack <konajacque@...> wrote: Isn't it great that you can nullify pain with these substances? And if that's the approach that suits you, then so be it - it's your life and you have the right to do with it what you will. My background affords me the opportunity of teaching those who come to me with dealing with the causes of symptom complexes and dealing with those causes as opposed to what you're doing, suppressing the effects. When causation is removed, if the damage hasn't already become too servere, the effects will dissipate over time as the body heals itself. This is an educational process which puts you in control of your own health destiny free from outside treatments or substances. It's my opinion that if you are an elderly person that you will probably be better off just continuing with what you've been doing for twelve years but if you are in your 50s or younger, you may want to think about taking this, the nutritional approach since it would probably bode well for better health for many years to come. If you would like, email me your regular mailing address and I will send you some information. Yours in health, Jack njteabag@... wrote: I am not the person you were writing to, but I wanted to say I also get the IVIG and have for 12 years now. It has helped me a lot. I have found through trial and error that what works best for me is 45 grams given over 12 hours every 4 weeks. If it is faster than this I get the headache and sick feeling. I also get benadryl (IM) at the beginning and again 6 hours into the treatment. Then at the end I get a shot of lasix. I also get another shot of lasix 2 days after the treatment. This method has really eliminated the side effects for me. I have tried doing it over two days and felt awful. I also tried half every two weeks and felt awful. The method seems to really affect how I feel afterward. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Hi, I would like some more info.... Thanks sooo much.... Re: rheumatic IVIG Isn't it great that you can nullify pain with these substances? And if that's the approach that suits you, then so be it - it's your life and you have the right to do with it what you will. My background affords me the opportunity of teaching those who come to me with dealing with the causes of symptom complexes and dealing with those causes as opposed to what you're doing, suppressing the effects. When causation is removed, if the damage hasn't already become too servere, the effects will dissipate over time as the body heals itself. This is an educational process which puts you in control of your own health destiny free from outside treatments or substances. It's my opinion that if you are an elderly person that you will probably be better off just continuing with what you've been doing for twelve years but if you are in your 50s or younger, you may want to think about taking this, the nutritional approach since it would probably bode well for better health for many years to come. If you would like, email me your regular mailing address and I will send you some information. Yours in health, Jack njteabag@... wrote: I am not the person you were writing to, but I wanted to say I also get the IVIG and have for 12 years now. It has helped me a lot. I have found through trial and error that what works best for me is 45 grams given over 12 hours every 4 weeks. If it is faster than this I get the headache and sick feeling. I also get benadryl (IM) at the beginning and again 6 hours into the treatment. Then at the end I get a shot of lasix. I also get another shot of lasix 2 days after the treatment. This method has really eliminated the side effects for me. I have tried doing it over two days and felt awful. I also tried half every two weeks and felt awful. The method seems to really affect how I feel afterward. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2007 Report Share Posted April 4, 2007 Hi Lynn--sorry I haven't answered you sooner. Working and being sick and going to drs takes up A LOT of time! Anyway, I only took the IVIG for 18 months--I went for one day every 3 weeks to my dr's office and he administered 30 grams to me during a 6-8 hr period. I think the fikrst two or three sessions he may have done 40 grams but that was too much for my body to handle--got fever, chills, headaches, and diarrhea. Even the 30 grams wasn't so great but I handled it better. Sometimes I handled it better than others. Sometimes I got GI upset from the Gamma. I don't recall the brand. He administered to me bec I had too much IVIG in my body probably due to lupus and Sjogren's and indeed my numbers have gone down to normal or close to normal. But I stopped the treatment afgter 18 months because I was in a flare from hell and didn't think the IVIG was working on me much anymore. When I wanted to try it again, I've run into insurance problems and that dr who was treating me isn't on my insurance anymore Even if my ins approved I don't know if I'd trust another dr to do it so carefully I don't think my body could handle 90 grams of IVIG over three days but everyone is different! Most of the other people who took the IVIG with me on a Sat int he drs office got larger doses and did it quickly and without reactions. Do you know if you have low or high IgG counts? My immunologist/allergist who administered the IVIG treated many autoimmune conditions with the IVIG. Carol E from NY Re: rheumatic IVIG Wow, that sounds like a lot really fast. I get 45 grams over 12 hours once every 4 weeks. I think if I got it in 3 or 4 hours, I would end up in the hospital too. ************************************** See what's free at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 > > I'm wondering if people have an opinion about the blood plasma called > Gamma Guard Liquid? I saw posts about Gamunex 10%. We were told that > my daughter would be infused with Gamma Guard Liquid, and I would like > to hear any experience from other's on the board... I don't know if the IVIG from this story is the same as you are referencing, but you can read and see if it is http://www.tacanow.com/pdf/autism2.pdf Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 itsallaboutkreed@... wrote: > > > Hospitals can be so frustrating! Make sure that your ordering doctor knows what is going on and understand's his need for a specific brand. It's well documented in the literature but your doctor must order that specific brand and state that no other brand can be substituted. He should be notified about the reactions that you saw and let him do the checking as to what he received. It is vitally important that you record the brand, amount and lot number from each infusion. I know that that's hard to get from a hospital pharmacy, but it's so important that you may need to get your doctor to order them to release the information to you. Sorry this is happening, hope you can get your product soon. In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Carie, Can they not ship the correct brand overnight? Ours always comes overnight. - itsallaboutkreed@... wrote: Hospitals can be so frustrating! I went to do my IVIG infusion for my son. I made sure last month that they had his brand for next time, and they said they had enough for 2 more months. I went today and of course they had none! He is brand intolerant, so he does not switch brands easy. The pharmacy tried to make me though. They swore he had used the other brand, he has not, but now I am thinking maybe they switched it without telling me last time even though we confirmed it. It came in another bottle, and the label was cut off,so it was hard to tell if it was correct or not. My nurse called the pharmacy and they said it was correct, now I am wondering if that is true or not. My son's blood pressure dropped to 80/60, and he had a really hard time. He was out of it all day, and threw up right when we got home. He has never had a reaction to his correct brand only other brands. I was very upset and frustrated to be sent home due to the pharmacy's error. Now my son will have to go 5 weeks, and this is way past when he is due. --------------------------------- Need Mail bonding? Go to the Q & A for great tips from Answers users. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 --- My kids only can take gammagard. Each of the three bottles comes with a giant red sticker that says, " NAME ALERT " so everyone involves double checks that it is correct. I would be FUMING if someone pulled a switcheroo on me. I wonder if there is any way you can find out if they did that or not. valarie In , Dale Weatherford <dale@...> wrote: > > itsallaboutkreed@... wrote: > > > > > > Hospitals can be so frustrating! > > Make sure that your ordering doctor knows what is going on and > understand's his need for a specific brand. It's well documented in the > literature but your doctor must order that specific brand and state that > no other brand can be substituted. He should be notified about the > reactions that you saw and let him do the checking as to what he > received. It is vitally important that you record the brand, amount and > lot number from each infusion. I know that that's hard to get from a > hospital pharmacy, but it's so important that you may need to get your > doctor to order them to release the information to you. > > Sorry this is happening, hope you can get your product soon. > > In His service, > dale > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 apparently not. ---- Rob or Sunseri <RobRose@...> wrote: > Carie, > > Can they not ship the correct brand overnight? Ours always comes overnight. > > - > > itsallaboutkreed@... wrote: > Hospitals can be so frustrating! I went to do my IVIG infusion for my son. I made sure last month that they had his brand for next time, and they said they had enough for 2 more months. I went today and of course they had none! He is brand intolerant, so he does not switch brands easy. The pharmacy tried to make me though. They swore he had used the other brand, he has not, but now I am thinking maybe they switched it without telling me last time even though we confirmed it. It came in another bottle, and the label was cut off,so it was hard to tell if it was correct or not. My nurse called the pharmacy and they said it was correct, now I am wondering if that is true or not. My son's blood pressure dropped to 80/60, and he had a really hard time. He was out of it all day, and threw up right when we got home. He has never had a reaction to his correct brand only other brands. I was very upset and frustrated to be sent home due to the pharmacy's error. Now my son > will have to go 5 weeks, and this is way past when he is due. > > > > > > --------------------------------- > Need Mail bonding? > Go to the Q & A for great tips from Answers users. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2007 Report Share Posted November 13, 2007 Why? would be my first question. There is a possiblity of reaction in that the body will reject this foreing immunoglobulin. Why not do supplements that boost immune function? Treat things like yeast/viruses? Maybe chelate if he has metals so his immune system can work properly. This is a very expensive suggestion and needs real justification before one does this. -- In , " laurellar " <rlaurella@...> wrote: > > Our DAN! is recommending IVIG therapy for our 7 yr old son. Does > anyone have any experience with this therapy? Your comments would be > appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2007 Report Share Posted November 13, 2007 We have two infusions worth of experience with IVIG. Our third round is Friday. Feel free to e-mail me offline for specifics. There is a woman named Pramilla (spelling?) who has a blog which talks about her experience with IVIG as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2007 Report Share Posted November 13, 2007 > > Our DAN! is recommending IVIG therapy for our 7 yr old son. Does > anyone have any experience with this therapy? Your comments would be > appreciated. Here is one really good recovery story http://www.tacanow.com/pdf/autism2.pdf Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2007 Report Share Posted November 20, 2007 > > Our DAN! is recommending IVIG therapy for our 7 yr old son. Does > anyone have any experience with this therapy? Your comments would be > appreciated. I have this story on my site http://www.tacanow.com/pdf/autism2.pdf Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 One of the biggest problems with IVIG are occasional shortages - most of the stuff, I understand, comes from overseas (Europe, I believe) and sometimes there is simply not enough - Start the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
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