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Question for Josee

judithdavis3 Message
22 Mar 2009, 05:00 AM

Do you speak English? I speak a little French-not enough to write. Are you on IVIG (immunoglobulin)? Is it working? How much how often? Any problems with it?
claude53 Message
22 Mar 2009, 09:53 AM

Bonjour Josée. Je suis heureux de te retrouver sur ce forum. Comment va ta santé avec ton traitement préventif. Supportes-tu les injections mensuelles, As-tu des maux de tête, des phlébites? As-tu fait des rechutes depuis ta primière crise? Meilleures salutations. Claude Pfefferlé Hello Josée. I am very happy to find you on this forum. How is your health with your preventive treatment . Do you support the monthly injections ? Do you have headaches, phlebitis? Did you make any relapse since your first acute shoc? Best greetings. Claude Pfefferlé
judithdavis3 Message
22 Mar 2009, 06:31 PM

Claude How much IVIG do you get how often. Is it 2gm/kg per month? Is it working? Over how long do you get it? I was supposed to get IVIG a few years ago but insurance would not pay and my dr did not pursue it. Judy
claude53 Message
23 Mar 2009, 10:48 AM

Hello Judit. Before the first IVIG treatment, I made 6 episodes of serious capillary leaks, threatening the vital prognosis, the first of which was on May 2003. On April 2005 I began a monthly preventive treatment with IVIG ( 2 G/ kg) . Since this date, I did not make any more relapse until October 2008, where a new SCLS could be stopped quickly by IVIG. In my case, it seems that the treatment by IVIG is effective not only in disease prevention but also in case of an acute leak. The treatment is very expensive and for this reason it is not easily accepted by the insurances. In case of a serious shoc, requiring a reanimation in an intensive care unit, it would be worth to suggest to the intensive medicine specialists to use the IVIG. Best greetings Claude