Does anyone else have MGUS?

@skate
Welcome to the Mayo Clinic Connect forum. I agree with Ginger that “watch and wait” would be my preference to the Plaquinol treatment, but of course I’m sure there was a good reason. Did your hematologist tell you why?
it’s so curious that siblings would both be diagnosed with MGUS. They say that it’s not hereditary. Those anecdotal stories about siblings or extended family members having MGUS or multiple myeloma certainly raise a lot of questions.
Fortunately, most people with MGUS will never progress to smoldering or multiple myeloma. I’m glad you and your sibling are getting frequent lab work, however. I always feel grateful that my MGUS was discovered. I feel as though I get excellent medical care and that if there is progression, I will know earlier rather than later. When you receive your check ups, what is the routine? Bloodwork and scans?

So I have multiple myeloma. My kappa numbers are high and M protein .4.
I have had 2 back to back STEM cell transplant and after the second one my kappa a M protein numbers calmed down some. I am now on a MGUS like state meaning holding steady. I am on medication of course! Let’s see how it developes in the next year!

@skate Welcome to Mayo Clinic Connect. Your experience seems to follow what many of us have found, that MGUS is discovered while another health concern is being searched out/followed.

I am glad you were taken off Plaquenil, and that your doctor has chosen the "watch and wait" approach.
Ginger

This happened to both me and my sibling about the same year-4 years ago- we are 74 and 77 respectively. Both of us have consistently been healthy eaters and have gotten regular exercise our whole adult lives. I fight with a 5 lb. yo yo that I think is hormonal (post menopausal). We both found out about having M-Gus from a routine blood test for something else. In my case, a suspected Lupus which turned out only to be nothing of significance and I was taken off the basic Plaquinol with no continued concerns. So thus far, each of us go for 1-2 blood draws a year with hematology. My Dr. didn't think heredity was that important but didn't rule it out either. I don't have any symptoms that are usually thought of to be associated with M-Gus.

I’m 70 year old and based on blood analyses. There was an anomaly of synthesis of IGG Kappa. Thank you for an answer!

FLC is free light chains (kappa and lambda). Measurement of these is used to help diagnoses and also monitor multiple myeloma and amyloidosis. Usually, the ratio of these two chains is also calculated.

Thank you very much Kay. 😊

FLC refers to free light chains. For some of us they are Kappa, for others Lambda. The somewhat Y shapes normal cells are missing one leg for kappa, and the other for lambda, making the cell more L shapes. FLC plasma cells are like a guest that won't leave, they serve no purpose other than getting on our nerves (neuropathy) or bothering other cells. The healthy plasma cells at least go after invading organisms.

What is flc?
Thank you 😊

I have had MGUS since 2002 - a long time. I no longer get anxious after my semi annual blood draws waiting for my results. I think this could be due to having a different Mayo hematologist (the previous one retired), who seems less anxious about me than my previous one. For 19 years I had blood draws every three months.
My M spike has risen from .4 to 1.3 over these 22 years and my flc have risen dramatically with big bumps after each joint replacement surgery (4).