Does anyone else have MGUS?

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.

@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

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 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?

I was diagnosed this summer and am swimming in data from FISH tests and bone marrow biopsies. My cytogenetics indicate a higher probability of progression to MM from MGUS. Does anyone else have these markers and be willing to share your story?

I’m not really sure what markers. I was diagnosed with
MGUS 6 months ago

@thencea
That’s a lot of data to digest. I have taken a very conservative approach with my MGUS dx testing. When we (hematologist/oncologist) discussed diagnostic testing, we opted to wait on a bone marrow biopsy because my kappa/lambda free light chains analysis is so stable. My question was at what level of progression would we stop watchful waiting and aggressively treat? If we are far from that threshold, what is the health benefit?
So…some of our MGUS members have FISH data to compare, but many, like me, do not and watch Kappa/Lambda values and the ratio until those values rise to the threshold of concern. I also get regular bone scans to look for lesions and they monitor my kidney, liver and measures of blood health every six months.
It is, statistically speaking, likely that most of us with MGUS will not progress to MM. Have you spoken to your specialist about what he or she considers to be the threshold of concern?

As I have posted before, I have had MGUS since 2002 - maybe longer - I suspect longer. My numbers have worsened but I have eschewed bone marrow biopsies and CT scans.
Some myeloma specialists are leery of the current clinical trials that start treating higher risk MGUS and SMM patients since no one really knows which of these patients will progress. The concern is that the algorithms that are used to make these decisions do not categorize patients into the same risk buckets. This information, which my MM specialist lectures about and espouses, has certainly made me much more relaxed.

My IgA kappa MGUS was diagnosed 8 years ago. Still asymptomatic although the kappa is now at 300 and kappa/lambda is 29. I have one mutation that increases my risk of it progressing, 1q21 gain (chromosome 1, long arm [q], location 21, and gain means one duplication). My BM plasma is at 15% but my oncologist says still MGUS because all my bloodwork and other tests are good. I try to focus on things in my life that I have control over because stress is bad for us. Getting enough exercise, fun, healthy food, and chocolate are important.

Hello all, I was diagnosed with MGUS in 2023 due to iron depletion. I had a bone marrow test, and it basically confirmed what the blood work reported. One year later the tingling and coldness in my feet has started, some tingling in my hands as well. Though I am still working, not quite ready for social security but close. So dealing with MGUS and now neuropathy life is certainly changing for me. Any and all experiences and thoughts are welcomed.