Does anyone else have MGUS?

@4kleo
Welcome to the Mayo Clinic Connect blood disorders group. I was diagnosed, like most are, with MGUS "incidentally" when they were looking at something else. I am 3 1/2 years post-diagnosis. Just being referred to a hematologist/oncologist is enough to take the wind out of your sails for sure.
I think that your question is one that we all have asked in one form or another on our MGUS journey. I think it's a very good question to ask your hematologist/oncologist. The reason I say this is that we are all so different. Some have coexisting conditions that complicate our journey. Overall health is something that your doctor will look at and determine what the benchmarks might be. Do you have symptoms? Although MGUS is typically symptom-free, many of us do suffer from peripheral neuropathy. So the strategy for dealing with your MGUS will be different for you than it is for me or anybody else on this forum.
I'm so glad you found us. Many of our MGUS members have had this blood disorder for decades, even multiple decades. Although I was very anxious initially, I am much less so now and live my life without worrying too much about my MGUS.
I have a few suggestions. Stay out of Dr. Google because a lot of the information is outdated. There have been many gains in the treatment of multiple myeloma and blood disorders in general over the last decade.
If you haven't already, find the right doctor. You want someone who treats blood disorder patients every day and you want one who will answer all your questions. write them down and take them with you when you go for your appointments. Hopefully, you have someone who can go with you to appointments to take notes and listen carefully to what your doctor has to say as if you're like I am, there's so much information that comes so fast it's difficult to absorb it all.
The typical strategy with MGUS is watchful waiting. That's a bit maddening for people who like to take the bull by the horns, and there are things you could do to maximize your overall health. Ask to be referred to a neurologist who might be able to prescribe some medication for your neuropathy. Exercise, even with accommodation for those things that you can no longer do with comfort. Eat healthy and most importantly, live your life fully every day. Don't let this define you.
When do you go back to your doctor again and do you believe that you found the right fit for you?

@hsminc
how curious about the impact of general anesthesia! I'm going to have hip replacement on my right hip April 1. (it is not lost on me that this is April Fools' Day)
This will be my first surgery under general anesthesia since my MGUS diagnosis. I will see how that goes as I definitely want general anesthesia.
It's so curious that you had this reaction. I wonder if anyone can connect those dots as to why? What does your hematologist/oncologist say?

Hello.. I am brand new to MGUS... November... I am just making my six month appointment for April..What number should I look for to determine my progression? I have had no surgeries, take no meds. ( save one dose of Fosamax for osteoporosis (actually the generic Alendronate)- no fractures yet) I have been blessed with excellent health for 76 years and this is throwing me a curve. I am experiencing some Peripheral neuropathy in hands and feet which is wrecking havoc with my usual walking and exercising. (dizziness. ) In input from anyone with MGUS is welcome. I am anxious, scared and generally discombobulated. Thank you

If your M spike is at 3 and you have neuropathy, you need to see a myeloma specialist at a center that sees a high volume of patients.
I have had MGUS since 2002. The M spike has varied from 1.1 to 1.7 and back down again. I think my hydration at the point of the blood draw may be responsible for the variation.
I also had a fractured hip that was replaced in January 2021. Surgery was done under regional anesthetic not general anesthesia. My free light chains went up and then came back down again. The M spike did not change. However, when I had a reverse shoulder replacement surgery in 2023 under a half hour of general anesthesia, my free light chains soared. They have decreased but not to the level they were before I had the surgery. I do not understand why as I had no problems with the surgery and feel great now.
My previous (now retired) hematologist wanted my bloods drawn every three months. The current one in the same practice thinks yearly is fine -- and every six months if I choose. I do choose every six months.

FWIW, I agree with Patty: curcumin may be of some help, but there is insufficient data to say so with any degree of confidence. Unlikely to be harmful in the dosage to which Patty refers (but always check with your doctor first anyway). For the complete story, perhaps presented with more optimism than the current data warrants:
https://www.cancer.gov/about-cancer/treatment/cam/hp/curcumin-pdq#

I have been taking 1-2 grams lately. Doesn’t seem to have any downsides so I am going to keep taking that amount. My doctor kind of shrugged too.
I have read those studies too which are promising but not conclusive. And some people seem to respond more than others. Time will tell.

@dcuste
I think there's a lot of interest in this. Leslie and I were just discussing it so I won't be repetitious, but I would add that I think given what some of the others are taking, my curcumin dose is fairly modest. I've had two rounds of blood analysis since I started. I hope the numbers continue to go down. If I plateau I might consider upping the dosage if my docs are on board.
I have another round of bloodwork and scans in May and we'll see how it goes.

@leslie2121
I am taking QUNOL ultra strength turmeric curcumin complex. I take 1000 MG twice a day.
My PCP hooked me up with the PharmD associated with her clinic and we went through all my medication's and talked about dosage. I have no Gastro issues with the dosage.
I think physicians need to have more data before they jump on this bandwagon. The studies that I have found related to curcumin have been very small samples. This one that I'm posting below is 25 patients. So the information is anecdotal and thus physicians consider it unreliable. I'm good with that. I don't think that the risk associated with taking curcumin (for me anyway) is prohibitive.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10966979/

Knowing that you had a positive result is real encouraging. I have a real trouble following the watchful waiting program.
My M-protein and IgM values have been doubling every 6 months and I went through the same reaction as you and also decided to give Curcumin a try. My oncologist had the same reaction as yours. I interpreted her reaction as she was just a going by the book type person and would never encourage deviation from the standard protocol most likely due to liability concerns. Can't really blame her for that.
I had read about an ongoing trial that was using 8 grams/day but couldn't find out any other specifics. So for the last few months I slowly ramped up using the C3 complex formula. I'm currently up to about 6 grams/day of 95% curcuminoids per day.
Can you tell me more details about your situation regarding blood tests results and curcumin/turmeric protocol?

How much do you take, Patty? And brand?
I was taking 4 gms daily of Thorne curcumin and my FLCs dropped about 25%.
I got tired of taking 8 capsules a day and cut back to 1 gm/day. They went back up. So considering resuming the higher dose. The m-spike remains low though, regardless. Thanks, and glad you’re doing well.