Hi All, Are there any people who have suffered pulmonary oedema as a sign of SCLS? John

Yes, I had this happen several times. Before I was properly diagnosed, I was told I had pneumonia. Now, if I take Prednisone when I have swelling, it helps get rid of the fluid. I am very fortunate to now know what has caused my severe swelling. Good luck to you, John. I hope you have a proper diagnosis and treatment.

Thanks for your prompt reply, giraffe. It took two bouts of SEVERE pulmonary oedema before I was diagnosed, then another two before IVIG was fine tuned, but now its all apples. (4 months or 14 weeks and 1 day, but who is counting?) The reaon I ask is because it seems to come on a lot quicker than some of the peripheral oedema. - I have relied on CPAP to clear the pulmonary oedema... Takes about 4-6 hours to raise my sats from <70 to >90. I also have some prednisolone sitting at home just in case. Take Care John

It's the opposite pattern with me. I only had 3 attacks before being put on IViG, but in all 3 I had the peripheral edema in my legs for a week or two, then it spread to arms, then trunk and face along with lungs. People often seem to report that respiratory infection is a trigger for an SCLS attack, but I wonder if they aren't experiencing edema and thinking it's bronchitis. That's what I thought, anyway. Treated myself for bronchitis by rubbing eucalyptus essential oil on my chest for the first two attacks. :-) Cathy

I Just returned home from a five day hospital stay. I traveled by Ambulance. My BP was 76/32 when checked by EMS. I had all the classic signs of a capillary leak and when I arrived at the hospital I too was told by ER doctors I was suffering with pneumonia amongst other horrible conditions. my hemoglobin was 6.3 my iron level was 0 and my BP stayed in the very low range. The Diagnosis was internal bleeding, but not one doctor has a clue where the bleeding is coming from. I saw a GI doctor whose opinion is I have severe GERD and somehow aspirated stomach acid during sleep, which caused my pneumonia. I was given an endoscope to check for signs of GERD. The GI doctor did find a 4cm diverticu-something in the distal duodenum (I hope you will forgive my temporary memory loss concerning the proper medical terms). But my stomach and esophagus were normal. I personally believe that I was suffering from pulmonary edema.