Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 Dr at UCLA mentioned this to us about a year ago and said they were working on it, I asked about it again a few months ago and he said they were years away from it still. I'm going to look into it and see if we can get into the trials, weekly SCIG has proven to be a bit of a pain the past 2 months and we've missed a lot of doses. CRAP!!! # & *@Q & #)! & @)#!*)(*)!@#(!@) like tonight... I put the Emla on at 8, had the kids in bed at 9 and planned to start infusing at 9:30-10. I got busy with something else and just realized its 11:10 and I totally forgot and with using the I can't just leave them in overnight and there's no way I can stay up until 2-3am while it infuses dd and the emla is starting to wear off at this point I'm guessing:( Argh! Were so far behind at this point we have no choice but to do IV to restart:( I don't know whats wrong with my brain lately, I can't seem to remember anything! I just emailed Halozyme to find out if UCLA is one of the participating centers, heck I'd travel if it meant we had a chance to switch to monthly SCIG without the side effects of IVIG. > > Phase III Trial Begins For GAMMAGARD LIQUID Plus RHuPH20 In Primary > Immunodeficiency Patients > http://www.medicalnewstoday.com/articles/134410.php > > > The way this reads is that it is still a 10% solution but they are putting > an enzyme with the Gamma Liquid to allow the absorption to be different. > > What I'm curious about is the following statement: > > " Subcutaneous (SC) administration of GAMMAGARD LIQUID with Enhanze > Technology is an investigational study and when approved could allow > patients to receive a full monthly dose in a single injection site in > their home setting. " > Do they really mean you could do the full monthly in a single subq site > and only once a month? > > Other member please read the press release and see what you make of it. > > Ursula - mom to (16) and Macey (13,CVID) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 UCLA is going to be participating from what I understand. We are on a study there currently for SCIG. Ursula - I think your understanding is totally correct, the SCIG with the Halozyme will be infused every 3 - 4 weeks - I know part of how often depends on the size of the person - so little guys like mine (all under 50 pounds) might have to do it more then every 4 weeks - but adults could do it every 3 - 4 weeks is my understanding. I heard about it about a year ago, and knew it was supposed to be going through clinical trials - I heard that from a specialty pharmacy person. As for us, we are on the Gammagard Liquid Study, doing it SCIG - From what I've heard from UCLA the next study is supposed to be for the new product. Kate ends the study in about 2 weeks - and she loves SCIG and will continue, Charlie feels the same way, and ends the study in 6 weeks. has to have S/D because of the reactions he used to have, so for right now we are still doing it IV - we'l consider a switch after kindergarten next year. Dayna > > Phase III Trial Begins For GAMMAGARD LIQUID Plus RHuPH20 In Primary > Immunodeficiency Patients > http://www.medicalnewstoday.com/articles/134410.php > > > The way this reads is that it is still a 10% solution but they are putting > an enzyme with the Gamma Liquid to allow the absorption to be different. > > What I'm curious about is the following statement: > > " Subcutaneous (SC) administration of GAMMAGARD LIQUID with Enhanze > Technology is an investigational study and when approved could allow > patients to receive a full monthly dose in a single injection site in > their home setting. " > Do they really mean you could do the full monthly in a single subq site > and only once a month? > > Other member please read the press release and see what you make of it. > > Ursula - mom to (16) and Macey (13,CVID) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 I have a stupid question. What is the purpose of doing SCIG once a month? I though the benefit of SCIG was doing it often enough that you don't have the levels have the big swings between infusions. L mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma Quote Link to comment Share on other sites More sharing options...
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