Long term MGUS: What changes have you had? Do's and Don'ts?

HI FREE SPIRIT,
I WAS DIAGNOSED WITH MGUS IN AUGUST OF 2007. OTHER THAN ANNUAL BLOOD TEST(S) AND A DR VISIT THERE HAS BEEN NO CHANGE IN MY LIFE. THE ANNAUL CHECK UP IS JUST TO DETERMINE IF THERE HAS BEEN A PROGRESSION OF THE CONDITION. SO FAR, NO CHANGE.
I HAVE JUST LIVED MY LIFE AND NOT LET IT BOTHER ME. I HAVE BEEN TOLD THAT MGUS IS FAIRLY COMMON IN FEMALES.
HOPE THIS HELPS.

@freespirit60, welcome. I moved your question about long-term MGUS, changes and tips of what and what not to do, to the Blood Cancers & Disorders support group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/ so that you can easily connect with others living with MGUS.

There are many MGUS-related discussions that you may wish to explore: https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=MGUS&index=discussions

Freespirit, what changes have you noted since first being diagnosed in 2021? How are you doing today?

Thank you very much.

That is very helpful for those diagnosed later than you. Thanks.
Harty

I was diagnosed in 2002 and here I am in 2025. My M spike and free light chains have increased but it is still MGUS.
I have paid little attention except when it is and was time for blood draws. My previous hematologist, who retired, wanted bloods every 3 months. My current hematologist orders them every six months.
I feel fine and if I had not gone to Mayo for routine care, my MGUS would probably have gone undiagnosed like so many other people. Over the years my ordinary blood tests (cbc, cmp, etc) have all been normal.
Depending on your lab values, you might want frequent blood tests at first for a couple of years but then if you are stable, every six months might be appropriate. There is no recipe that fits everyone.

Good morning Free spirit.
I was diagnosed IgM Kappa in 2012. I was stable until 2023 when my FLC ratio became abnormal, I developed an m spike which was not before seen on electrophoresis and protein in my urine was found to be mildly elevated. Most recently my small fiber neuropathy has progressed. Still MGUS, although I am seeing a progression. I had a BMB and fat pad biopsy, both which were normal. I am watched closely for a disease called amyloidosis which can be seen in MGUS. All the best on your MGUS journey. Stability is the key!

@freespirit60
Hi, and welcome. As Colleen says, there are so many resources for us here on Mayo connect. There are many of our members who have had MGUS for decades now. Like you, I was diagnosed in 2021. It was a weird time to be dealing with the diagnosis. I was just like pretty much everybody else and panicked when I got digging into Dr. Google. Since then, I have come to accept that I will probably die of something else before the unlikely event that my MGUS will morph into multiple myeloma.
I consider myself lucky that my MGUS was discovered accidentally. I believe that I get the best medical treatment of anybody I know because of the diligence of my oncology/hematology team. Bonus points because my PCP, who knew absolutely nothing about it, is now pretty well-versed and this can be a benefit to her other patients.
I have opted not have a bone marrow biopsy, but if my number started to go up, I would certainly do that. I am taking a fairly low dose of curcumin daily. My numbers went down to what they were when I was first diagnosed, but my last round of bloodwork they had bounced a little bit. Still well within a range that would be considered MGUS and not smoldering.
We are all so different and coexisting conditions also impact our overall health. I think it’s important not to use someone else’s data as a template for where we feel we need to be.
Thanks so much for checking in and I hope you keep in touch and let us know how you are doing.

I have had it about the same time. MY GP tells me no worries as the M spike rarely appears. She checks blood for a variety of things every 4 months or so. But that is at my insistance.The local hem/onc local is not at all concerned but major Cancer Center is a watch and wait and see you in January. So it seems one way or the other none of them require monthly testing or aggressive treatment at this time. This is very strange to me as a nurse because we do annual breast exams& monthly self exams, pelvic exams, and monitor what I would consider less serious diseases fairly frequently. But since MGUS always precedes Multiple Myeloma it is rather casual and attitudinally very much watch and wait. The hematologist at cancer hospital ( an hour trip) does very much want it followed but when I last saw him he had not seen me prior. I am concerned myself as my bloodwork showed an M Spike elevation first in 2019 and no one noticed it, as I went back and checked all my labs since 2019. So it all seems rather casual but the hem/onc MD at the cancer hospital noted that once it is there it can hide and pop up later so in other words once u have an M spike it is always there. And it seems not all convert to MM and it is just a watch and wait. I think they must do some more current research and I do check for that every so often from major cancer centers via the NIH. Now with the new federal budget I did go on the NIH as it was impacted by budget cuts and it seems the research is not nearly as plentiful as previously it seems.

Thank you very much 🤗.

@freespirit60
https://www.mskcc.org/cancer-care/clinical-trials/22-175
I have attached a link to the Memorial Sloan Kettering Hospital trial which I believe is still in progress and which has shown benefits of a plant based whole foods diet, also using Curcumin and Omega 3. (I was not part of the trial)
I was diagnosed with IGM MGUS in 2021 with mildly elevated and decreased immunoglobulins and Mspike. I have blood work every 6 months and since my numbers continue to gradually move further out of range, my hematologist recommended a bone marrow biopsy and full body skeletal CT last January (all of which were normal) and I will have a full body organ scan the end of this month. I insisted the 2 scans be scheduled 6 months apart due to the amount of radiation. The scans look for lesions and other causes of infection as it is believed that occult infections or inflammation can possibly contribute to this condition. I am currently 71 years old and do not have neuropathy or any other symptoms except low iron which is probably not related to the MGUS and could possibly have started when I was taking a moderate dose of Qunol Turmeric every day for osteoarthritis (which works amazingly well!) beginning 2 years ago and began noticing unusual intermittent fatigue and weakness. I have since learned that moderately high doses of Curcumin can block absorption of iron. My bone marrow biopsy showed no iron storage in the bones and my ferritin level is on the low side but has not caused anemia yet. I have kept a spread sheet of all my IGM (elevated-high) IGA (decreased-low) IGG (decreased-low) and Mspike (which continues to gradually climb). This gives me a visual record I can look at every six months when I have labs drawn. Even though my IGA and IGG (bodies defense) are out of range and low, I never get sick with the flu, colds etc. All my other labwork has always been normal and I attribute this to a very healthy diet and active lifestyle including walking 3 miles outside every day. I was initially reluctant to have the bone marrow biopsy and full body CT scans but decided to go ahead since my immunoglobulin markers have not stabilized and continue to progress out of range. Knowledge is power as they say. Hope this helps in some way.