Does anyone else have MGUS?

I've got my first hematologist appointment next week, and I intend to ask whether the MGUS may have any impacts on any of the other medical issues I've got going on, or whether any of those issues or their actual/potential treatments might have ramifications for the MGUS.

At this point, I've got a multi-page table tracking my various medical issues: upcoming appointments, notes/questions for the appointments, past appointments, outcomes from past appointments, drugs, side effects of the drugs, actions I've taken to manage the side effects of the drugs, non-traditional stuff I've tried, etc. Really, it's a journal in table format. Because I've given up entirely on being able to hold it all in my head.

The medical community operates in silos -- not their fault, it's just how it is. But the human body/mind is not made up of silos -- it's an integrated whole. Expecting my excellent but overworked PCP to coordinate all that effectively is just absurd. So these days, when I see each physician (let's see -- at the moment, it's seven of them plus, of course, my pharmacist), I try to encourage them to think about the consequences of each diagnosis/treatment on all the other diagnoses/treatments.

I'm 72, I'm living a quite engaged life, and I am not my diagnoses. Since I want to hold onto that as long as possible, doing my best to help my medical providers operate as a team has become one of my priorities. Because it's really hard for them to do that if the patient isn't actively helping.

I recently asked my migraine neurologist to take a quick look at several possible insomnia drugs I planned to discuss with my PCP, and she flagged one that she routinely uses off-label with success as a migraine preventive. You never know what can pop when you try to be somewhat holistic about things.

Here is a website that can provide better answers than me:
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

Can you please tell me about MGUS (IgG lambda) ?

Hi,
I am 50 years old, I recently did a blood test that showed I had Band 1 Monoclonal IgG with lambda light chains 2.3g/L. My GP believes it to be MGUS. I have my first haematology appointment on Thursday. I also have prediabetes, kidney stones and an inflammatory skin condition, hidradenitis supporativa of which I have been on Humira the past 2 years. What should I ask the Haematologist?

Hi Amber,
That means the world to me; thanks so much for sharing it. It's a waiting game for us as we're still awaiting medical assessments, so it gives me some hope while we wait. I wish you the best on your health journey as well. Hope you get the best care in the world. I will update ours when I know more.

If it helps to know: I was diagnosed with MGUS last week and I presented with anemia as well as other symptoms. So anemia can be a stand alone and not an indicator of MM. Hope that helps.
Keep us updated, I’m interested in what you find out.
All the best,
Amber

Update, bone mineral density test results normal. I don't fit the criteria for osteoporosis. GP ordered CT. Still waiting for serum Immunofixation results. She prescribed Dicoflenac as I told her they helped with the pain when I broke ribs a few years ago.

My own decision is to start a GLP-1 and I already have my primary care provider blessing on this. But let me be clear, I am not choosing to start the GLP-1 to slow MGUS progression. If I get that benefit, that’s an added benefit. It has more to do with my prediabetes number (A1C 6 from 5.8), struggling with weight 6’5”/260lbs, a big belly, and the neuropathy. Without those issues I would not start a GLP-1 to slow the progression of MGUS at my level,0.99 g/dl, IGg. It’s intriguing information but I prefer evidence based medicine with well done, randomized control trials. If the metformin study is positive, you can bet the GLP-1 companies will start their own trials. Another population study compared GLP-1 to metformin and insulin in type 2 diabetics. The GLP-1 was superior to insulin in reducing all hematologic cancers, and better than metformin in reducing myelodysplastic syndromes and myeloproliferative neoplasms. GLP-1 showed no difference in MGUS progression compared with metformin. BUT the GLP-1 and metformin may have anti proliferation benefits outside of glycemic control.
“ Hematologic cancers among patients with type 2 diabetes prescribed GLP-1receptor agonist” JAMA network
Again, I would not be starting a GLP-l or metformin solely on my level of MGUS, 0.99IGg. If I was high risk MGUS or SMM, I would be eagerly waiting the metformin data and have my provider treating my MGUS/SMM aware of it and the GLP-1 data. As a sidenote, if you’re on a GLP-1 or metformin, watch your B12 levels particularly if you have neuropathy.
Best wishes everyone!

@buckett This is an interesting thing to read. What does your medical team offer for their input on this?
Ginger

MGUS the twists and turns and hopeful.
My MGUS journey (diagnosed Nov, 2024)has taken some interesting turns. The whole body scan, revealed masses on the adrenal glands and sigmoid colon. CT scan of adrenal glands determined benign mass BUT identified aneurysms with arterial dissections in the celiac artery, hepatic artery and splenic artery. Very rare. They thought it was due to a past trauma but I can’t remember anything specific. Repair at this time has more risk than potential benefit. So it’s another, watch it every 6 months for increased enlargement. My colonoscopy is scheduled this coming Thursday.
Last week my EMG confirmed peripheral neuropathy. MGUS related or B12 deficiency? A lab test this past January revealed the low B12 level and I have started B12 shots. Fingers crossed it helps the neuropathy. I know about the correlation of MGUS and neuropathy. Just wondering how many MGUS/neuropathy individuals also have low B12? Diabetes is also related to neuropathy. Does that also correlate to MGUS/neuropathy?
Now the HOPFUL and may have been presented before in this forum but I think it is something to keep an eye on. A study is looking at the potential of Metformin (diabetes agent) slowing the progression of high risk MGUS and SMM towards multiple myeloma. The study is completed and should be released this summer?
A new population study (this is an observational study in contrast to the Metformin study which is a randomized trial) just caught my attention regarding the GLP-1 diabetes agents slowing the progression of MGUS in diabetics.
“Association between glucagon-like peptide-1 receptor agonist use and progression of MGUS to multiple myeloma among patients with diabetes “
In short a 55% reduction in progression.
Would this same benefit be seen in prediabetics. I am one of those. Or even in MGUS individuals without diabetes?