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nwbsaw Message
14 May 2009, 05:06 PM

Hi everyone, This is Wendy from Idaho. My husband Nolan has SCLS. He had a very bad episode in Nov 2008. He was life flighted to SLC, Utah. When we got there, they gave him hetastarch or hydroxyethyl starch. He stopped leaking shortly after they administered it. I thought it was a coincidence. But on Monday he had to be flow again and the same thing happened. He stopped leaking almost immedately, his kidneys started working, and his blood pressure went up. Has anyone else had any experience with this drug in controlling the shock? I haven't heard anyone mention it. Thanks, Wendy
aporzeca Message
14 May 2009, 11:52 PM

Hi Wendy! I'm so sorry to hear that Nolan had another serious episode, and I hope that his kidneys, limbs and everything else came out OK. As to your question, Korean doctors published an article 2 years ago on their use of pentastarch to treat 2 patients during acute attacks of SCLS. You will find their abstract in PubMed, at If you want the actual article and cannot download it, let me know and I'll send it to you. I asked NIH's Dr. Druey about the use of pentastarch and this is what he said: "Pentastarch is an albumin substitute that is a bigger protein and therefore would be predicted to stay in the circulation longer. However, I don’t think it is thought to correct the underlying disorder, but it might be useful to consider it for treatment of an acute episode, as Wendy mentioned." Hey, you never know!
clswalt Message
15 May 2009, 01:21 AM

Hi Wendy I have CLS and have had several incidents this year, but very mild. I go to the ER early and they give me Albumin IV. After 15 minutes, it is a feeling of total clearing. Not sure how to explain. I know when to go in before the pressure drops too much. My kidneys have not taken a hit since March 2008. I was surprised at Arturo's comment about Dr. Druey. If Nolan stops leaking with hetastarch and I stop with Albumin, maybe there is something to the them. My Intensive care doctor tried the Abumin last year. I have not had a serious incident since March 2008. I have had 4 Albumin ER visits this year alone. Does Norman feel different before he has to be rushed in. I was told not to wait. Just go in. I get really tired and just feel funny (goose bumps) when the blood pressure starts to swing up and down. The meds I take from Dr Greipp recommendation stops the passing out as far as I am concerned. I think the meds are the trick. We are going to leak. We just need to go in before it becomes too much of a problem. It would seem that most of us have had several problem 2008 and 2009. Good luck to Norman. Walt
nwbsaw Message
15 May 2009, 02:14 AM

Thanks for the information. Nolan doesn't always go right in to the ER. we take his pressure at home. But he does know when he is going into an episode. If his pressure goes into the 80's, I give him IV fliuds at home at first. but we might try the hetastarch first next time. Nolan turned around quickly this time with out any major problems. Thanks for the information. Wendy