Does anyone else have MGUS?

Dear Tracy, just saw this note on this very special forum. I have Kappa light chain mgus. I don’t know if there is truth to this , but have seen it 3 or 4 times about curcumin helping to those of us with mgus. Please know you have lots of good support here. Highly intelligent folks giving wonderful advice. Take care. 🥰

@samraz, I thought I'd tag you on this discussion to connect you with others living with MGUS.

Thanks 😊

My daughter has been diagnois with MGUS. I have been researching to see if it was from the Covid vaccine? Any answers are welcomed.

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?

@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

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.

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

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.

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.