Hi All

Since diagnosis in 2015 I have cotinued to experience quite sever episodes  of SCLS requiring hospitilisation ( ave 3 x per year) as well as numerous, frequent milder episodes ( on average 10 days per month) not needing hospitilisation but still making me very sick. Not on any treatment for SCLS as yet. During this time my MGUS paraproteim has been steadily rising to 17g/l. Bone marrow biospsy done recently confirmed 20% plasma cells so am now classified as Smoldering Myeloma. I would like to connect with any other community members in a similar situation.

Hi, why are not you in treatment for scls?

I too do not understand why, if your SCLS has been duly confirmed, you are not receiving IVIG on a monthly basis.  The next "quite severe episode" could well be the one that damages your organs and thus kills you.  Uncontrolled SCLS is a deadly condition.  I have seen it at work.

I have a similar diagnosis. I have smoldering myeloma and capillary leakage syndrome. Doctors at Mayo clinic still trying to figure it out.

I also have been diagnosed with smouldering Myeloma. I have a monthly infusion of IVIG (which has help tremendously with my leaking) and have done now for the past 2 and half years. A year and a half ago I was diagnosed with smouldering Myeloma and now contemplating starting Chemotherapy and stem cell transplant on the advice of my Haematologist. 

Ruth Nolan (NZ)

Hi  Ruth,   I sympathize with your situation.    I have read of a case of SCLS which was resolved with treatment for multiple myeloma....some small consolation perhaps.  I can find out the reference if you like or perhaps Arturo is familiar.