Hi community I am wondering if there has been any work done on measuring paraprotein levels in association with episodes. My paraprotein level is steadily rising.. does anyone else measure this on a regular basis and has anyone noticed any pattern in relation to SCLS symptoms.? Thanks.

My levels are being measured every 6 months. As I haven't had an attack since going on IVIG I have no info on what the levels might be during a leak. The good news for me is that my protein levels are steadily decreasing. The Drs have no explanation but they are very happy.

Thanks Warren - thats interesting and does suggest that the paraprotein is linked in with the SCLS episodes - not an independent process. My haematologist is recommending a bone marrow biopsy but I am thinking I will wait a little longer and see if I can get the SCLS symptoms under control and see if that decreases or slows the protein. Appreciate your reply. J

Early on I had a couple of bone marrow biopsies but I don't believe there was anything of significance. They are a baseline however for any change which could indicate myeloma.

Hi if your talking MGUS levels then yes my have risen since I have been on IVIG and I have just been diagnosed with Myeloma all so my liver enzymes have risen. Ruth Nolan NZ

I'm so sorry to hear that, Ruth! I hope it's a mild case that won't even require treatment, or else one that will respond to the treatments available. Please have your physician inform Dr. Druey at NIH of this turn of events. It is an unusual outcome within an already exceptional situation.

No treatment just yet however when I do it will be chemo and then a stem cell transplant yes on top of ISCLS its not much fun however there is life to be lived on the good days and tolerance to be had in the bad times. We have been doing some reading on T cells and the research out of the U.K. Is very promising a 80 percent hit rate on people with only three months to live with Myeloma. Keeping our fingers crossed its not to far away from standard treatment for myeloma. Kind regards Ruth

Hi Ruth. Thinking of you and wishing you the very best of good fortune with your treatment. Best wishes Warren King

Thanks Warren

Hi Ruth You have a wonderful, positive attitude.. Just great John

Thanks John

Thank you Ruth for your message - it is one that we all need to remember. I join the others in wishing you the very best. Davec

Yes Davec is sure does. And thanks Ruth

I am so sorry to hear this Ruth. My liver enzymes went sky high after 5 months of IVIG - my AST up to 2000. I was diagnosed with auto immune or drug induced hepatitis. I am now on prednisone and azathioprine. I wonder if there is any correlation? You do have a great attitude!

Hi Ruth, Sorry to hear of the Myeloma and wanted to wish you the best. I know my brother had one negative bone marrow biopsy done when he was first diagnosed with scls at the mayo clinic and that they kept track of his MGUS levels through through the years because of the slight risk of Myeloma. I hope they can just keep watching it for now. I have been thru chemo and a stem cell transplant after I was diagnosed with Acute Myeloid Luekemia in 2013. I had some complications with the chemo but the transplant was much easier and well worth the risk. As the others have said having a positive attitude definitely helps!! Warm regards Linda