Hello all. Last Sunday my husband experienced an acute SCLS episode even though he has been receiving monthly IVIG treatments since January 2012. In fact, this episode happened only 2 days after receiving his last monthly dosage. Just hours from getting home from his transfusion, he developed a strong stomach virus. Afer 3 days of being ill, his heart rate suddenly increased. A huge marker for us. So, off to the ER we went. My husband was diagnosed with Gastroenteritis, caused by either a hospital bug or contaminated food. The virus triggered an SCLS episode. His hemoglobin elevated, his albumin dropped, he started to swell in one arm and he started to get a mottled pattern on his arms and legs. A classic acute episode for him. Fortunately, we were taken care of by our specialist and the internal medicine team who have all worked with my husband. They were able to shut down the cytokine response very slowly administering another IVIG treatment, along with some fluid. My husband survived and is home recovering now. We will continue with monthly IVIG as it does appear to be helping. He made it six entire months without an episode. However, this teaches us that we must remain alert, especially when he's ill. For anyone who wishes to compare notes, details of my husband's transfusions are as follows: Dose: 2gr/kb/month (every 4 weeks), spread out over 2 days Brand: Privigen: January to March 2012 Gamunex April to May 2012 (switched brands to try and reduce side effects) Maximum rate: 250 ml/hr

Hi Liesa, I'm so sad to hear that your husband had an episode while on IVIG. Wondering if the change in brand made a difference, if Gamunex is less effective than Privigen. I hope & pray it will never happen again. Ann

Correction: dosage info in my post above should say "kg" not "kb". Just a typo on my part. Ann, thanks for your kind words.

MY husband has been on IVIG treatments for five months. after the last three treatments, after a couple days, he has had a slight episode., not as severe as prior to treatments but an episode. The doctor has tried to speed up the flow rate taking only 5 1/2 hours in the two days as the first two treatments the flow rate was taking 8 hours each day. after reading your posting we are feeling that an increase in the flow rate may not be as good as spreading the treatment out over a two days /eight hour treatment. Our next treatment, because of the holiday has to be interupted with a day inbetween the two days. tuesday and then on thurs. hoping that works well. glad to hear your husband is doing better will try and keep on the board for info and update. had mentioned it to my doctor and he had not heard of any other patients on IVIG experiencing an episode after treatment. any one reading or posting have you had any "slight" episode that may have gone unnoticed. while being on IVIG? charles

A couple of months ago i got swelling on my both feet, which lasted a few days. however only one continued to swell, it is now going on four months. I went to the doctor, who tested for liver, nothing showed wrong, he said it was varicose veins, but this was denied by two others, I have no veins showing at all. I then went on a detox programme (almost 4 months), it helped with exercise but the swelling is still there everday though not as bad. i realise if i do not exercise it swells. i did a deep vein trombosis test but proper flow of blood etc shows very normal. I went to a vascular surgeon last week who did no test but just looked at the DVT report and my foot. he said i have IDIOPATHIC CAPILLARY LEAK SYNDROME. He recommended compression stocking at that's it. I did research and realise this is a very rare lethal condition. I have some questions I hope you can help me with: 1. How can I be sure that the diagnosis is correct, what tests are done to determine that? 2. Do you know if Trinidad has such a place or test that deals with this? If not where can I go. 3. What cure is there? 4. What treatment is there? 5. Where can I get same? I have looked up that Bilberry fruit or extract helps to rebuild capillaries, I bought and started it yesterday. I am also taking aeorobic oxygen and probiotic from the detox programme. What can you tell me about this? I look forward to hearing from you. Cherry

What signs can I look for in an episode or an attack? Cherry

Welcome to our community, Cherry! There are answers to your questions in the Disorder Details and Disorder Resources sections. I suggest you print out those pages, read them, and give them to your doctor. If he knew anything about SCLS, he wouldn't tell you to wear compression stockings and that's it. From what you describe, I bet that you do not have SCLS but, rather, some other swelling disorder. SCLS patients swell for a few days, but not on a long-term basis.