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DiscussionDoes anyone have any info on MGUS treatment or risk of progression?
Blood Cancers & Disorders | Last Active: Nov 13, 2023 | Replies (34)Comment receiving replies
Replies to "I really can't thank you enough for taking the time to explain all of this. It..."
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🌺
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.