Does anyone else have MGUS?

Yes, and at age 73 still in MGUS stages, no real symptoms but a bit of neuropathy in my feet. This expert explains it quite well in her YouTube video if you really want to get into what it is, how it does or does not progress, etc. This doctor is tops in the MGUS/MM field and works at the Dana Farber Cancer in Boston. If you go to YouTube you can find MANY very credible videos that explain in even more detail what MGUS is and the various tests, and symptoms one can get over time, etc.

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@psue4 Welcome to Mayo Clinic Connect. As you read through the posts here, you will find that many people may be diagnosed with MGUS, but the vast majority live for a long time without any advancement of the disease into smoldering myeloma or beyond. In general, it is a "watch and wait" situation, with labwork every three to six months, following the results.

I am curious what aggressive treatment may have been suggested at the University hospital, and the reasons they gave for it?

Here is what Mayo Clinic has to say about MGUS: https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
Ginger

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My daughter is getting aggressive treatment due to test showing protein in blood and urine. She is seeing a kidney and hematology every week. Currently on 3 chemo meds. This week will be a follow up after being on the meds after 3 treatments. Hopefully it will be a good visit. 🙏

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Thanks, this was very reassuring! PCB

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@psue4 Please check in and let me know how that appointment goes! What chemo meds is she taking, may I ask?
Ginger

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Like someone above mentioned, you need to get your daughter to the best hematologist / oncologist you can find, preferably at a major medical center. I was diagnosed in early 2022 after a rheumatologist did some blood work for joint pain that I've been having for a few years. I consulted a friend who is a retired oncologist and they told me that MGUS is rare and not to fool around with local docs because they don't see MGUS enough to really know what they are doing. I now have a great doc who did all of the initial testing and checks my bloodwork every 3 to 4 months. He has also been great about explaining everything to me. I am stable for now, but I am still battling the extremity joint pain. I am super-sensitive to many medicines used to treat the pain and one even caused my airways to inflame causing major breathing issues; although I don't know if that had anything to do with the MGUS.

I don't know how old your daughter is, but I was told that most people don't develop MGUS until their 70's or older. And, that they usually die of other causes before developing into smoldering or full-blown multiple myeloma. Those of us who are younger have a higher chance of actually developing into the full myeloma disease, although it may take 15 or 20 years for our cells to reach the numbers where they actually treat the disease. Monitoring is so important because we don't want to have any lag once our cells begin to spike into the treatment range.

My oncologist always encourages me to get my vaccinations. I doubt he would be doing that if there was a correlation between the vaccines and the disease. At one time, my Ig numbers were VERY low and my pulmonologist was extremely worried about me catching anything, but they have since come up a bit. My numbers which are not great by any means, were still up after I got my last bivalent Covid vaccine.

I wish your daughter all the best. I'm puzzled that they are pushing treatment at this stage. I would get a third opinion, because I'm not sure why the University would want to treat at this stage. Then again, I'm not a doctor. Have they checked for bone lesions?

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Cytoxan, Dexamethasone, Bortezomib
All low dose, pill form.
Is it possible to be private when answering you?

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Hi there, I was diagnosed with MGUS in 2017 because i went to the Dr knowing there was something wrong with me so, blood test after blood test for over 18 months and 3 HIV tests later they decided to send me to the Hematologist for high inflammation markers and white blood cell and low red blood cell count. The Hematologist said my IGA Kappa light chains were high and my Kappa/Lambda ratio were abnormal, still no name for all this strangeness, so i got to researching and next appointment i told him i had IGA Kappa light chain MGUS and he looked quite surprised and i said i google a lot. Well he agreed with me and said the reason i didn't tell you was i didn't want to worry you, whatever! Anyways since my first blood test my Kappa light chains have gone up from 39.40 to 91 and my ratio has gone up too last results they jumped up by 30%, but they still don't seem worried so i try not too but every time my next bloods are due i start worrying, my bloods are next month, i'm not sure what to think if they jump up again and at what number should i start worrying does anyone know? Thanks in advance Michelle.

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I was diagnosed with lupus and MGUS after my covid vaccination. No idea if there is a link. I have really bad neuropathy. Does anyone else experience this? After 2 neurologist. 2 rheumatologist with different diagnosis I am going to Mayo on the 21st of this month to the experts. Hopefully I will get a path forward.

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Like someone above mentioned, you need to get your daughter to the best hematologist / oncologist you can find, preferably at a major medical center. I was diagnosed in early 2022 after a rheumatologist did some blood work for joint pain that I've been having for a few years. I consulted a friend who is a retired oncologist and they told me that MGUS is rare and not to fool around with local docs because they don't see MGUS enough to really know what they are doing. I now have a great doc who did all of the initial testing and checks my bloodwork every 3 to 4 months. He has also been great about explaining everything to me. I am stable for now, but I am still battling the extremity joint pain. I am super-sensitive to many medicines used to treat the pain and one even caused my airways to inflame causing major breathing issues; although I don't know if that had anything to do with the MGUS.

I don't know how old your daughter is, but I was told that most people don't develop MGUS until their 70's or older. And, that they usually die of other causes before developing into smoldering or full-blown multiple myeloma. Those of us who are younger have a higher chance of actually developing into the full myeloma disease, although it may take 15 or 20 years for our cells to reach the numbers where they actually treat the disease. Monitoring is so important because we don't want to have any lag once our cells begin to spike into the treatment range.

My oncologist always encourages me to get my vaccinations. I doubt he would be doing that if there was a correlation between the vaccines and the disease. At one time, my Ig numbers were VERY low and my pulmonologist was extremely worried about me catching anything, but they have since come up a bit. My numbers which are not great by any means, were still up after I got my last bivalent Covid vaccine.

I wish your daughter all the best. I'm puzzled that they are pushing treatment at this stage. I would get a third opinion, because I'm not sure why the University would want to treat at this stage. Then again, I'm not a doctor. Have they checked for bone lesions?

Jump to this post