Does anyone else have MGUS?

I have MGUS, it was found accidentally when I was going through a bunch of bloodwork for something else.
I see an oncologist once a year to do bloodwork to make sure
nothing has drastically changed. I have been doing this since 2013 and my numbers have moved around a bit but nothing to be concerned about. In the beginning I got all stressed about having the bloodwork and going to the oncologist, now my numbers have been virtually nothing for so long l don’t stress over it much anymore.

Thank you, Ginger. This is such an odd condition. It has just sucked all the energy out of me. I want to travel again, and go on long adventures, so I’m determined to get my bleeding source figured out.

I think it's important to run any decision to use OTC medications or supplements by your PCP AND hem/onc physicians. I am fortunate that there is also a PharmD attached to my PCP's clinic who went through all of my current medications and ruled out any potential complications posed by the addition of curcumin to my regimen. I am not otherwise immunocompromised so I have taken 2000 MG of curcumin daily for nearly a year and a half now with good results and no apparent side effects.

@lisamichelleely Well, at 70 we usually are not as energetic as we were at 50! Generally, good diet and mindful living can go a long way to helping us. Yes, MGUS can be an odd condition, but as you have read here, many of us live a long time with no progression of this condition. I hope you can wrap your head around the fact that as you have this diagnosis, it doesn't need to be a source of lack of energy. Our minds sometimes play tricks on us, leading us to think the worst of things. It doesn't need to be that way.

What bleeding source are you speaking of? Is this the condition they were testing for when they discovered the MGUS? If so, have they narrowed that down for you?
Ginger

Same as you
Go yearly now to hematologist-oncologist for labs.
My results are status quo, so I only need labs once a year.
If results change, I will need more frequent labs.

Hello! I actually have an upper and lower GI procedure tomorrow morning; I’ve had three previous procedures to try and identify the source of my bleeding. Perhaps it’s a lesion that splits open then “heals” has been mentioned. It’s been tricky to navigate as I’m in ER more often than I’d like to be for blood transfusions. Doc doesn’t think it’s a bone marrow issue, although sometimes I need blood and I’ve had no bleeding, so hopefully will know more tomorrow! I do as much as I can, while I can! It takes a bit to bounce back from whatever this is. Literally sucks the energy from me. Fingers crossed!

@lisamichelleely
What a journey you have had so far! You are so right. We should be attuned to our bodies and listen when they are trying to catch our attention.
Best of luck for good outcomes with your blood tests today. Will you let me know how they go?

Curcumin is an anti inflammatory substance. Anti inflammatory substances are viewed as anathema by MM and also other cancers. That said, it is controversial and if you decide to take it, consult with a MM oncologist/hematologist - not a pcp and not a "general" oncologist/hematologist. I have read about many issues but have also read positive stories about this substance. The stories were enough to make me think NO but others view it differently.
I have MGUS (IgG lambda); it was diagnosed when I was 59 years old - 23 years ago. My dad had IgA Kappa SMM so I knew what this was about and I was frightened. I think my MM hematologist was also frightened. He ordered blood tests every three months for 17 years - at that time he retired and my6 current MM specialist is not as concerned. I take celebrex and a statin drug (zocor). I have taken zocor since I was 52 years old (although I did not have elevated lipids - long story) and have taken celebrex since 2006-7 (an anti inflammatory) and have never had issues with each. Both drugs are being studied because some investigators believe they can be repurposed for MM. Statins interfere with a rate limiting step for MM and Celebrex is an anti inflammatory. There have been large VA patient studies using statins, which were positive - the conclusion was that patients that took statins had lower rates of progression. Mayo (RST) and the Cleveland Clinic had a clinical trial with celebrex, MGUS and SMM. The doses, however, were low and the results were null. There have also been studies with analogues of Celebrex.
This is a long answer to your question. Again, my advice is to approach Curcumin carefully and get good information to make a decision.

I have had MGUS since 2017. MY M spike showed up then. The M spike is a sneaky little character. It is there sometimes and then goes away. Mine seems to make an appearance every two years which my Oncologist told me in simple language is it is still there, even if it does not show in blood work. I have noticed each time it comes back it comes back a little higher. I notice fatigue and stiffness. This year I seem to have developed sharp elbow pain for the past 3 months. I am wondering if it is related to MGUS. My primary says it is tendinitis but did order a battery of tests, including all the MGUS and myeloma tests. Anyone else have elbow pain? Thanks. Chris

After reading about the comment I originally replied to I went to urgent care Sunday, yesterday, March 2. X-ray should osteoarthritis in my neck. I will follow up with the bone doctor.