Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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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!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704975/#:~:text=IgE%20myeloma%20has%20no%20specific,fatigue%2C%20dyspnea%2C%20and%20anemia.
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.
Hi ChefT,
Wondering if you are still taking the Qunol form of Turmeric or have switched to Curcumin? About six months ago I reached out to the Qunol folks asking if they would provide a certificate of analysis to make sure this product was free of heavy metals etc and never got anywhere with them.
Thank you!
Tumeric only contains a few percentage of curcumin. Good to see if tumeric interferes with any meds before taking it (antiinflammatory, thins the blood...). It is good to take curcumin supplements that contain black pepper. The pepper contains peperine, which increases GI absorption and slows breakdown of the curcumin in the liver, thereby increasing bioavailability. Absorption is also improved by eating curcumin with healthy fats (because fats tend to digest more slowly?). I read that bromelain may help bioavailability, but who knows what works in the lab and if it is effective when eaten. Bromelain is a chemical in pineapple and papaya. I use a lot of tumeric in cooking (even hot chocolate [with pepper]) because I like the taste. I'm a 69 yo female and have had MGUS about 8 years.