Does anyone have any info on MGUS treatment or risk of progression?

Careful! Curcumin is a blood thinner. I once gave a legally blind lady a ride home because she had bleeding in her eyes. She took six Curcumin daily. Not any more though.

Thank you so much for your reply. I'm finding the amount of info out there to be a real mine field. From what I've gathered from the Mayo clinic I'm "low risk." Also the Pangea model predicts my chances of progression at 20 years to be low. I have no idea how it is able to make that prediction as it seems every case is highly individual as you've said. Then there is a study stating that MGUS can progress to myeloma within five years. The Myeloma UK info, which is what I was given by my haemotologist, also puts me in the "low risk" category. However this seems to be a real generalisation and I don't see how it can be accurate. All of this contradictory info has left me feeling like even the so called experts don't understand MGUS.

MGUS - from what I have learned - definitely isn’t well understood (the key is in the title: undetermined significance = we have little idea what it means or how important it is to the health of a person).
And I find such long ranging ‘predictions’ are like trying to predict weather in one year/5 years/10 years etc, exactly what will the rain be like on any given day…the further away, the less accurate. Yes there are patterns, but the nature of patterns is that there is always more than one type of pattern that contributes to the spread over time, thus there can be outliers as easily as their can be mainstream/expected results..and these patterns of spread are aggregates of data collected from places and services that may or may not include data specific to your given situation (eg: virus exposure as a child, toxin exposure/metabolism, underlying disorders/stressors/nutrition, for example, let alone something directly attributable to MGUS itself that may be unique but not accounted for in the data used for analysis). So, yes; these predictions are just that: predictions. Not conclusive, comprehensively inclusive results applicable directly to any individual. They are what I consider to be a rough guide only (like saying summer will be hot, winter will be cold, but no further breakdown or accuracy can be given for one specific day in those seasons when those seasons are months away). Given that it’s a guide, I believe to place too much stock in it in terms of individual applicability then places an undue and artificial stressor on a person. I believe it’s better to understand what predicted risk is (just a kind of educated guess), however primary concern is individual case factors and how these develop individually over time, and then how these can be used as aggregate predictors for that individual based on the knowledge of how each predictor (symptom) discretely behaves within the realm of the disease (eg: kidney disease, light chain disease; if they are present in the individual, watch, monitor, and then predict future outcomes for that individual based on what is known about kidney disease or light chain disease in MGUS).
I hope that’s helpful.
I imagine this new discovery of yours regarding MGUS is your kind of ‘baseline’, and rather than using educated guesswork without knowing your individual pattern over the next year of monitoring to determine risk of progression while feeling the worry of how that is like fitting a square peg in a round hole when it just doesn’t work, it may be better to learn about how symptoms and regular test outcomes can be indicators that show your individual characteristics - then, you can make predictions as to whether you are part of the mainstream risk of progression ‘educated guessing’, or you’re landing outside of that aggregate calculated predicted trajectory. If you see changes like I have for instance, you’d likely lay outside of that risk prediction (like snow falling in summer; it’s happened before, but nobody would have predicted it to happen at all). But if you do not see significant change or notice symptoms, then it may be that you’re within the risk prediction - either way, there’ll be a better sense of clarity and confidence about how to progress with life and medical care into the future.

Thanks so much for your reply. I like the weather analogy and it certainly feels that way to me. That's why I don't really see the point of the risk stratification. My haemotologist said that it could progress in a year or in twenty years. It has made me feel a bit lost and unable to process something so unpredictable. Do you have any insight to what patterns I should look out for?

No worries.
I’m glad using weather as an analogy helped (I used to explain the principles of statistical analysis to my former students using weather very often, because it is a system of statistical analysis that we are all quite familiar with in that the further away it is, the much less accurate it is. This may indeed be helpful regarding analogous thinking which could be applied to the understanding of calculated projections into the future..it’s not the same calculations as used for MGUS, but it will conceptualise the process of predictions, I’m hoping: https://scijinks.gov/forecast-reliability/#:~:text=A%20seven%2Dday%20forecast%20can,right%20about%20half%20the%20time.
Here is a test result tracker and explanation of tests tool, where you can record your data over time and read about the specific tests in more detail: https://www.velcade.com/files/pdfs/Lab_Test_Tracker.pdf which may be helpful in learning what it is you’re wanting to keep watch of, and the measured changes over time…anything changing quicker than expected is a flag for further investigation when you’re otherwise asymptomatic (not noticing any body changes).
You’ve mentioned IgG Lambda..this talks about the immunoglobulin isotypes, including their function in the body. When you have an isotype that isn’t working properly because it’s made wrongly (your IgG), keep in mind that you may have less ‘properly functional’ IgG, and so you may get infections easier (but this also depends on if you do or don’t have other isotypes that are involved - eg: in my case, I have reduced IgA along with lots of wrongly formed IgG, so my immunity is reduced across both isotypes): https://www.ncbi.nlm.nih.gov/books/NBK27162/#:~:text=IgG%20antibodies%20are%20usually%20of,and%20activate%20the%20complement%20system.
And then there is lambda..there are two things that pretty much matter and that is the ratio of kappa to lambda, and the overall volume of lambda (that second one is a bit controversial in my understanding, because lambda light chains have a much higher molecular weight than kappa, therefore less of them can cause more damage, like kappa is rain, and lambda is a hailstorm: both are precipitation, but one washes away the garden, and the other smashes the house, given the same volume, because the individual mass of a hailstone is greater and not malleable like the raindrop): https://healthtree.org/myeloma/community/articles/kappa-lambda-light-chain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1895159/#:~:text=Patients%20with%20a%20kappa%2Dlambda,having%20a%20monoclonal%20kappa%20FLC.
https://my.clevelandclinic.org/health/diagnostics/22369-kappa-free-light-chain-test
Don’t worry about the discussions regarding myeloma - the important take-away is learning what to look for, considering MGUS is not as critical as myeloma, and that you’re living with MGUS, and that watching these criteria can help you be informed if any changes occur. If they don’t, great! If any do start, then you’re ahead of the game in terms of flagging things to your Gp and haematologist. And anything in general where you feel lethargic for days, have night sweats (which could be low grade infection), or ache/pain that wont go away, go to the doc and tell them the symptom characteristics (there all the time, doesn’t change with rest for eg), it’s impact on your function, and how long it has been present. Also, if your Gp is smart, they will know that inflammatory markers like CRP and ESR may not be high when IgG or other isotypes of immunoglobulins aren’t reacting/working properly to result in increases of inflammatory markers (meaning inflammatory processes can be present, but the non functional immunoglobulin/s aren’t responding - an indicator of this is sometimes responses to vaccines: if you have a reduced or absent response to vaccines, then your immunoglobulins aren’t responding accordingly to the vaccine, and not building immunity to it..a blood test can show if a person responds appropriately to a vaccine. In my case, I do not respond to many vaccines - my Ig’s don’t build immunity because they’re not the properly working Ig’s - so I have no or only very minimal/temporary responses to vaccines).
I hope this helps with some of what to look out for.

I really can't thank you enough for taking the time to explain all of this. It really is invaluable info at a time when I need it most. I will certainly have a look at the links. I was wondering about the involved immunoglobulins as my IGM is slightly low and my IGA and IGG are slightly high. My immune system has never been great, right from the time I was a little kid. I also suffer terribly with allergies and asthma which I believe can be an immune response.
My Lambda is also slightly high but the FLC ratio is within normal range so I guess that's a positive. I have noticed that my eGFR is below normal so that will definitely be something I keep my eye on.
Again, thank you so much for taking your time to reply with such detailed info. I massively appreciate it. It's a nice day where I am in the UK today and I hope it is for you wherever you are. Best wishes.

No problems, I’m glad it’s helpful in some way.
Biclonal gammopathies are rare from what I understand (which is where a person has two affected Ig’s - and it sounds like in your case, IgA and IgG, with noteworthy low IgM, and an immune reactivity/sensitivity in IgE..the main mediator in allergies). I don’t know the risk projections for this, however it’s worth having regular tests in the early stages so you can determine what is normal for you and when your normal if/is starting to change into something that needs action.
If eGFR is changing and you’re not on a medication that impacts kidney function, it’s worth watching this more frequently (for instance, every couple of weeks - at the moment, I am currently eGFR less than 50 so I have this tested weekly). It’s also worth keeping tabs on your sensation in hands and feet, and reporting if anything changes (for instance, the hot water still feels uncomfortably hot from the tap, or does it feel warm or room temperature only?)
I think it makes sense to monitor you while thinking outside of the risk prediction tools because your situation isn’t one that has been factored in to the risk stratification as far as I am aware (I may be wrong) in having a biclonal gammopathy, and so because it’s unique, the monitoring needs to be measured against your previous results over each interval, and against the initial diagnostic result (measuring against the previous result as well as the first result shows both interval change and overall change: both are important when considering if progression is occurring, especially if there are symptomatic or measured/sign changes too..symptoms = sensory changes, measured = eGFR changes, for instance).
That’s really nice to hear the weather in the UK is not too bad this time of year; here in NSW Au it’s been pouring rain all day! Hehe.
Take good care.

Was she taking blood thinners also? I have never heard of anyone that had that happen!
I’ve read that up to 8 grams a day is considered safe.
But if you are on blood thinners you shouldn’t take curcumin because it increases the effects.

Our mutual retina specialist questioned her on that and she said she was taking no blood thinners….that she knew of. She was not informed that taking 6 turmeric per day would have the effect of thinning her blood and cause bleeding into her eyes. The day after I drove her home I called the retina specialist who verified that yes turmeric thinned her blood and could have caused the bleeding

I will never take it because my Hepatologist advised to avoid herbal remedies. Apparently they are bad for the liver. Suggesting to not take too much initiative when considering taking various supplements. FIRST check with your physician. Best regards, Leslie!

Hey there @nick86, in the interim since the last few messages here, I have been on idle in the back of my brain regarding the particular symptoms you’d mentioned along with the specific involvement of your Ig’s, and I am wondering if you’ve been worked up by an immunologist?
Reason being, your comment mentioning having illnesses since childhood is particularly concerning regarding an underlying congenital or acquired group of immune disorders that give rise to repeated infection as a result of some faulty types of discrete Ig’s. There are IgG’s (IgG1, IgG2, IgG3, and IgG4) that have different roles, and if any of these show incorrect amounts, then there is reason to be investigated for something called primary immunodeficiency (PI) https://www.cdc.gov/genomics/disease/primary_immunodeficiency.htm#:~:text=People%20with%20primary%20immunodeficiency%20(PI,how%20early%20they%20are%20detected. and seeing if there is one of these present, because then the doctors may be able to see which symptoms apply to a kind of PI and which are attributable to MGUS, when reviewing a thorough history. I have not investigated a link in these disorders, and I do not know if one exists or not, however it is worth covering all bases when it comes to history of symptoms and disease, to ensure the correct Dx and therefore Tx is applied in each persons case. Also, changes in IgM and IgA can be involved in PI (in more than one of its various forms) https://www.niaid.nih.gov/diseases-conditions/types-pidds
https://primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi and one that comes to mind off the top of my head to use as an example is something called CVID (which may not be what you have), which has impacts on immune function and effectiveness, for instance. There is a multitude of other PI’s/PIDD’s (as they are called in one of the links) and so a specialist opinion is very much warranted to drill down into the test results and investigate if anything else is grumbling along besides MGUS which could be causing you some symptoms, either historically or currently.
This is moving outside of the information that I have familiarised myself with, so I hope this can support a good start in following up on additional avenues that may be relevant/worth viewing to eliminate as a concern.
I hope this is helpful🌺