Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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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.

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@skate

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.

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@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

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@steveutnv

I was diagnosed with MGUS four or five years ago, and have been seeing the same hematology practice since then. He tells me everything is stable, but I just looked at my blood work from a month ago. I see my recent free kappa light chain reading (52.8) is way higher than the reference range 3.3-19.4. Six ago that reading was 54.0 so at least it's down a bit, but a year ago it was 46.0. I left a message for the NP I see to call me about it but haven't heard back - he didn't mention it at all in my recent visit. Should I be concerned?

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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!

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@skate

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.

Jump to this post

@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?

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