Diagnosed: MGUS

I have had MGUS also- 4 years now with minor fluctuations with low numbers and see my oncologist yearly now.
Can you think of anything you did to improve your lab results? Congratulations on the improvement, btw!

I was diagnosed with MGUS in 2021. My symptoms were severe right rib pains on my back, intermittent fevers, headaches and sometimes dizziness. My former PCM would not listen to my complainta for over a year. He was saying that I was fat and should lose weight. My BMI at the time was 27.3. I am a Family Nurse Practitioner. I had the fear that something was wrong with me, especially with my bones as I was earlier diagnosed of pre-Osteoporosis. My grandmother on my maternal side had Osteoporosis histories, with 3 in the family that were deformed, including my granmother who had spontaneous hip fracture.
On my father's side, he died of Multiple Myeloma at age 71. I was afraid. I related all these histories to my PCM, but he never paid attention. I then request from my insurance for a change of PCM in the group.
I was re-assigned a Family Nurse Practitioner, and the staff informed me she was a very nice and thorough provider. The first day she saw me, she asked me to please tell her my whole health history. She listened attentively! She then revealed to me some abnormal lab results in my record for the past 2 years, and asked if those were discussed. I told her that I have never been told anything about abnormal lab results, and have no access to their portal.
We talked and agreed on repeating the blood work immediately. She also had me create access to the portal. The results of the lab result she ordered were worse than the previous ones. She immediately referred me to HEM/ONC STAT!
At HEM/ONC first visit, the physician was very kind, patient and understanding. He ordered bone scan, lab draws and urine test, all done within one week. The Bone scan result now reveals total osteoporosis. The lab and urine results were terrible. He went ahead and performed bone marrow draw. He then confirmed that I have MGUS.
Since then, I visit twice a year (seeing him once) and his other staff once. I have been doing labs every six months. Fortunately, the numbers had gone down remarkably. There are just minor negative numbers now. My last test was this past month, and the results were better that the previous one.
However, I am anxious at times, and I pray that a cure will be found soon to prevent transition of MGUS to Multiple Myeloma.
We are gathered here praying for one another on an issue we have no power of control over it. We will continue to talk to one another, encourage each other, and believe that redemption from this disease will happen at our time.

Please ask for a bone marrow biopsy. This is not something that can be let go untreated as it creates too much protein that will attack your organs. Md9c5or said if he didnt detect mine, things coukd have turned fatal within 6 months. Do you bruise or bleed eadily?

You’re right. No one really knows what the affects of these drugs are going to be in the future. I think that if a person has an underlying condition, the drugs will effect them differently. I didn’t even know what MGUS was a year ago. Waygovy gave me intense Diarrhea and constipation. It was hurting me and when I stopped it, I no longer have this gut problem that was unbearable. I liked losing the weight but I’m doing it on my own with exercise and control. I’ve lost more weight now properly then on the Waygovy. I am watching what I eat because I’ve become allergic to dairy and other foods. Someone said that there was a study done at Farber and Waygovy does not interfere with a person having MGUS. I’m not so sure about that because the drug hurt me. I really appreciate everyone’s input though. I just want to get to the bottom of what’s going on with my health and whatever it is, treat it properly….

We’re there more symptoms then the anemia and bruising?

No, I have not had a bone marrow biopsy. I have been going to all kinds of Dr’s. My liver enzymes, AST, bilirubin, ALT have all come back abnormal. I’m having a CAT on my liver. I’m not going to let this go untreated. I really feel it is Amyloidosis. I’ll get to the bottom of this. Thank you for responding to me.

Have you had a bone marrow biopsy done? I have had Primary Amyloidosis for 3 years. It was not detected in any blood tests. I was anemic and bleeding and bruising easily, so my hemotologist did a bone marrow biopsy and that is where the Amyloidosis was detected.
It's been a roller coaster ride, but I am alive and have good quality of life. Best wishes to you. Please don't let the Amyloidosis go untreated.

Glad to hear you’ve had MGUS 23 years! I’m going on 4 years myself.
Can you share how it’s been a roller coaster for you? Thanks, and here’s to many more years of stability.

Very interesting about Waygovy. I too have MGUS and have been on Monjaro for 7 months. My platelets and WBC numbers have gone way done (not good) from right before I went on Monjaro. I am wondering if there is a possible correlation. These weight loss drugs are so new, they really don't know.

I don’t think there is any connection. I saw a recent study out of Dana Farber and Irene Ghobriel where that drug or a similar one turned out to be protective in MGUS patients.
There are many possible reasons your FLC may have gone up including an infection or other inflammatory cause.
The same is true for your back and heart rate. Don’t borrow “trouble.” But it is smart to get everything checked out thoroughly so you feel more relaxed.
I have had MGUS for 23 years and it has been a roller coaster ride. I have a different hematologist now and his “calmness” makes a difference.
Best wishes! You may never progress!