I wanted to know if people to receive IVIG are still leaking? I was diagnosed the 11th on january 2013 and I am always leaking with some days a gain of weight and somes days I lose weight . I am fed up with the leak ! Some morning my eyelids swell, my cheeks my legs and hands to. I will have soon my first infusion is that why I wanted to know if you are still leaking? thank you for your reply. Anne laure.

Hello Anne Laure, There are good reasons to believe that your SCLS will be improved with chronic prophylactic IVIG. I think you should receive a treatment that has proven, ie 2 g immunoglobulins / kg every month. Best regards. Claude

Bonjour Claude, je posais cette question ,car en fait ma première crise date de janvier 2009 mais tous les matins depuis environ 2003/2004 je me réveillais avec mes doigts gonflés et encore maintenant mais personne ne savait pourquoi.Je pense que cette maladie devait "traîner" depuis longtemps? Savez vous si tous les patients "fuient" en permanence? pensez vous que je dois recevoir de ie tous les mois?je le saurai la semaine prochaine car je retourne à l’hôpital. Un forumien m'a donner les coordonnées du Pr Amoura au quel j'ai écris,j'attends une réponse? Anne laure.

Dear Anne Laure: The first doctors who started giving IVIG to SCLS patients were French, and they did so as long as 15 years ago, although the treatment became more routine in France only about a half-dozen years ago. The experience was that most patients stopped having episodes, although not always immediately, and in some cases patients experienced one or two additional episodes of lesser severity after being on IVIG for many months. We have in our community one of those patients, claude53, with whom you already have communicated. He has been on IVIG since 2005. The good news about IVIG started to spread out of France in 2008, and then the therapy began to be tried in patients all over Europe, in North America, and elsewhere around the world. Nowadays all SCLS patients who were having confirmed episodes -- especially frequently, as in your case -- are all getting IVIG and virtually all are reporting no more episodes. We have more than 30 patients in this community (including me) who have been receiving IVIG during the last 3-4 years and have been able to resume normal lives. Several medical articles describing the effectiveness of IVIG for patients with SCLS are listed in the section Disorder Resources, the most comprehensive of which appeared in April 2011, reporting the results obtained by a team of doctors under Zahir Amoura of the Département de Médecine Interne, Hôpital de la Pitié-Salpêtrière, Paris. The various articles published since that time are all reporting excellent results, but we know that, as is the case with all medicines, IVIG is not 100% effective. Indeed, we also have in our community a couple of patients who have had confirmed episodes of SCLS despite being on IVIG, and one of them, from France -- one of Dr. Amoura's patients, actually -- died in February of 2012 from episode-related complications despite being on IVIG for several years. To my knowledge, however, no patients have volunteered to stop receiving IVIG. We also have some patients on IVIG in our community who have reported having some symptoms -- not necessarily of an episode of SCLS, sometimes the symptoms are reactions to the IVIG itself -- before the usual 4-week infusion cycle is over. I recommend you read the Discussion Forum titled "4th Week Symptoms" for a discussion of such issues and how doctors and patients are dealing with them, by adjusting the timing and dosage of the IVIG. In conclusion, IF you have been properly diagnosed as having SCLS, and IF you are experiencing frequent episodes of SCLS which are confirmed by laboratory or HemoCue evidence -- because there are other swelling-related illnesses -- then your doctors should be putting you on an IVIG therapy in order to stop all such episodes. Any and all confirmed capillary leaks can cause, and usually do cause, detected or undetected damage to your organs and the inside of your arms and legs -- and any of them can cripple or kill you.

Hello Arturo, thanks for your reply ,I was diagnosed as having SCLS.Claude53 has given to me the e-mail adress to Pr Amoura and I will write him this afternoon...I will keep you posted as soon as I go back to the hospital next week,I am always in a good mood,but somtimes I stress and say to myself "I have a silly disease at each attack,I can die.. Anne laure."

You sound like a chronic SLCS patient to me. Some have speculated that this is a slightly different form of the disease. See the thread chronic leaks cSLCS.

Hello krogers, how long have you been sick? does your desease severe or slighty. For me , I have never had collaps,doctors think my symptoms are slight...for the moment!!! what about you krogers,how is your health? Anne laure.

Hi Starfrance. You can see my history on my profile page. I have never had the continual leaks you describe but was getting increasingly frequent bouts of leaking which lead to a crisis situation which was alleviated by IV fluids. Since IVIG I have had no leaks and all seems to be going well.

Hi Krogers, as I always leak, maybe it's that wy I am often tired ? my hospitalization is delay to the next thursday, I have so many questions, I am in haste to ask my doctors, I will keep you informed at the end of this week. Take care...Anne laure.