Has anyone addressed _*Immunoglobulin infusion*_ as a viable treatment for SCLS symptoms?

bonjour, oui, c'est très très efficace, j'ai un traitement d'immunoglobuline mensuellement depuis Août 2008. sans aucune rechute. avant de recevoir, j'ai été très malade durant 8 mois. bonne chance. Josée

Dear photodonn, It currently appears that the treatment by monthly immunoglobulin infusion is very effective. The side effects are usually not important. The cost of this treatment is expensive and insurances are not ready to take in charge...More and more patients with SCLS benefit from IVIG and acute episodes of capillary leak clearly appear to recede. I have SCLS since May 2003, with 6 severe, life threatening, acute leaks. I started IVIG on April 2005. Since then I did not have any new acute leak. Claude Pfefferlé - Switzerland

Check out all the Discussion Forum posts with IVIG in the title, such as "OK, all. IVIG" and "IVIG." I have been receiving a monthly IVIG infusion now for the past 15 months -- which is why I am still alive.

I have been receiving IVIG treatments since April 2010. I have had very minimal symptoms from the CLS since. It is very hard to confirm what are normal symptoms and those from the CLS anymore. Before the treatments, nothing seemed to stop the "leaking". So yes, IVIG is the best solution so far. I am very sure that IVIG has also kept me alive, as Arturo has noted for himself. Walt

my 4 year old is recieving ivig monthly and has had 2 rounds of it so far, a double does in the icu at sick kids hospital and on here at home at our hospital. his first attack was in may of 2010 and had 2 more episodes since that date and the last one lead him to a cardiac arrest and life support. during this time whenever he seemed to get a cold bug or a a little virus the cls was triggered. the last episode he was confirmed to have influenza a. in mid january he got sick again with a flu bug and not a sign was displayed of cls begining. his blood work was great during this time. we are hoipefully that because of his past 2 ivig and his daily does of singular is what keep in free of the episode beginging. he is schedualed to recieve the treatments monthly.

Thank you all for your response. My Hemotologist has done some research and is going to check to see if my VA program will cover the cost. It is a big committment to have infusions once a month for the rest of my life but if it will stop my attacks it is worth it. My last episode was number 6 and the worst one yet.There had been a year since number 5 and I don't believe I will survive the next one. Thanks again.... ...Donn