Does anyone else have MGUS?

Welcome to Connect, @joyelizabeth. It’s interesting that you were diagnosed with Hodgkin’s lymphoma but never had it. Does that mean your diagnosis changed?
This would be a condition that requires monitoring with blood work. It might be something you need to be more proactive with calling your doctor to have a checkup and labs run to check to see if there’s any progression.
People with lymphoma can develop neuropathy and bone pain so I’d really encourage you to check in with your doctor.
Are you working with a hematologist?

I was diagnosed with it but never had Hodgingkons lymphoma and I was told my blood would be checked altho never seems to be. I think I have peripheral neuropathy in my hands and all my bones ache I had a brain tumour found incidentally but it was excised no chemo

I have been diagnosed with MGUS this last month. I also have diabetes, heart failure, pulmonary fibrosis, stage 3 kidney failure, all from treatment I received in the 90's for Hodgkin's Lymphoma, stage 3. My biological father died of multiple myeloma, and I had 2 aunts on my Grandmothers side with Hodgkin's Lymphoma and some type of lukemia. My doctor says not to worry and it will be checked every so often. I do have some weird symptoms like a neurological jerking and burning all over my body at times that I can't explain. Just wondering if anyone else was dx. with MGUS after treatment for Hodgkin's?

The articles you sent were very helpful...thank you so much. Christine

I went to allergist at Mayo after the IgE was noted to be so elevated..but do not have allergies. I did grow up near DuPont plant years ago and wonder if the fumes from that are in anyway connected to my blood work. It is a mystery...and every year my IgE continues to be in a very elevated range.

@cdeldeo IgE is an immunoglobulin that often is related to allergies. It is very rarely associated with MGUS. Have you had any testing by an immunologist regarding allergies? I recall a long time ago, my mother going through allergy testing, and the only thing she was not allergic to was her cat!

Also, https://www.msdmanuals.com/en-kr/home/immune-disorders/immunodeficiency-disorders/hyper-ige-syndrome#:~:text=Hyper%2DIgE%20syndrome%20is%20a,%2C%20lungs%2C%20or%20other%20organs.
Ginger

I was diagnosed with MGUS 5 years ago as my IgE was 90,000....the only patient my oncologist has ever had with these crazy numbers. Am doing fine....78 yrs old, female....and being checked once per year. Cannot understand why I continue to receive such elevated IgE numbers. Any ideas?

Curcumin (used with black pepper [peperine]) is a strong antioxidant/tumor suppressant compound within tumeric. Those of us with MGUS take it to slow (hopefully) the progression to SMM or MM due to deranged (precancerous) plasma cell growth. It works in the lab but there insufficient research to know if it works in us. The below cancer.gov pub on curcumin/MGUS did not have a statistically significant decrease in free light chain molecules (deranged), but it was only a 3 month study with 36 people. Meh. The second link had better results for controlling MGUS. There are a number of peer-reviewed articles on MGUS in ResearchGate, that are mostly written to other scientists. I'm a retired research scientist (chem, not med.). The online expansion of research papers occurred during the Obama administration because research funded by the public should be more available. If you search, "MGUS curcumin" is a good place to start. Check with your doctor/phamacist before taking tumeric/curcumin in case it interferes with meds, blood thinners, etc. Peperine may increase intestinal permeability (a negative issue for those of us with celiac or other GI problems). Best to take with slow-digesting meals. Whew, information overload.

https://www.cancer.gov/about-cancer/treatment/cam/hp/curcumin-pdq
https://aacrjournals.org/clincancerres/article/15/18/5917/74421/The-Potential-Role-of-Curcumin-in-Patients-with
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429287/#:~:text=The%20main%20mechanisms%20of%20action,cellular%20signaling%20pathways%20%5B10%5D.

Accidentally found to have monoclonal gammopathy from a biopsy because I was anemic and they couldn’t figure out why. Then I received a diagnosis of lupus about the same time explaining the anemia. I wasn’t aware the two could be related. What is your understanding? How does curcumin help?

Yes.