Does anyone else have MGUS?

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?

Rochester MN

@sal99 There is no known link between lupus and MGUS after vaccinations for COVID, that I have read about. What many people may not understand, is that lupus is an autoimmune condition. When we get a vaccination, our own bodies are triggered to respond to a known condition like COVID, to prevent it. Underlying conditions that may already be at play in our systems might get prompted to also "raise their heads". They were already there, laying dormant in effect. Our body's response to the vaccine might kick another condition into being active.

If you read the link above from Mayo Clinic about MGUS, you will see there is not a definite cause. I am glad you will be going to Mayo Clinic to the experts. Which campus will you be at [Arizona, Florida or Minnesota]? I will be interested to hear what you find out!
Ginger

I’ve been living with it since 2010 and it’s amazing how many professionals have never heard of it. I continue with my blood work every six months. My oncologist suggested that I do a bone marrow test to see if we could identify a link to what type of cancer my MGUS would produce (not sure if I’m saying this correctly) but luckily there was no dna links. My numbers have remained pretty stable over the years but it can cause a lot of anxiety while your waiting for your results.

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.

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.

Greetings, nothing I have read on MGUS connects dots between the COVID vaccines and MGUS. I’ll probably never know exactly how or why I have it. There are so many common exposures that we think nothing about but are later informed are carcinogens. Tobacco exposure was at one time held harmless.
As Ginger says, MGUS is a wait and see thing. I found a good hematologist/oncologist and he watches for progression. In the unlikely event that my numbers get wanky enough that I require treatment, I will get a second opinion at one of highly specialized Multiple Myeloma treatment facilities. Until then, I feel fine. I go about my life not giving much thought to the MGUS. I travel, spend time with friends and family and enjoy life. I hope your daughter can do the same.
My one piece of advice, which I don’t think my fellow posters will find objectionable is to find the most experienced hematologist/oncologist that you can to monitor her blood work. That’s key. If you are getting surgery on a knee, you don’t go to a dermatologist. You want someone who is an experienced specialist.
Let us know how it goes.
Patty

Following with similar inquiry. I was diagnosed with MGUS shortly after my first vaccine (J&J in 3/2021). (I continued to get two boosters (J&J and Moderna) afterwards anyway but there were no MGUS flairups, fortunately.) Thank you for posting psue4. Looking forward to viewing other replies.

@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

My daughter was just diagnosed with MGUS. Her specialist that are treating her said she had protein in her blood which they were keeping an eye on. She did bone marrow test and scan and slight blood appeared in bone marrow. They wanted to see her back in 3 months to keep an eye on progression. We went for a second opinion at one of our University hospitals and they suggested aggressive treatment so it didn't progress. So many medicines and so much stress. Should I worry so much?