Does MGUS cause red blood cells (RBCs) to drop?

@bojean
I’m so sorry to hear that your oncologist was so dismissive. From my own experience, I’ve found that my primary care physician was quick to say that she got little training about blood disorders in general. I do believe it’s important to have a hematologist/oncologist you trust to keep track of your MGUS numbers.
Can you ask for a referral to a new one?

I have MGUS and have had low RBCs intermittently. There are many reasons for low RBCs and the whole picture needs to be assessed. My hematologist said low red cells can occur in MGUS because the bone marrow is making excess plasma cells and that “crowds out” the red cells.
I think since your Dr is dismissing your concerns and questions, it’s reasonable to find a different doctor who will take you seriously and get to the bottom of your anemia and what is causing it. It may not be related to the MGUS and could be treatable to help you feel better! I hope you can do that.

You might want to ask your doctor about iron infusions.

Like me, you had a parent with MM, making us more high risk. (My dad was diagnosed with SMM but it could have been early MM). That said, I have had MGUS for 22 years. While my FLCs and M spike have increased, I am holding. I am 81 years old.
Yes, MGUS can affect your RBCs and can cause anemia. You might consider liquid iron.
Anemia, low hemoglobin, hematocrit can be but are not always signs of MGUS “progressing.” These can also be signs of bone marrow issues associated with aging.
Many doctors think that at our age, we have lived long enough and they do not want to be bothered with us.
You need to be assertive; maybe get a new doctor, including a hematologist with special qualifications in MM.
I also suggest looking at your insurance. I hope you have traditional Medicare as that gives you more provider options.
Good luck and best wishes!

I am 79 with MGUS..father died of multiple myeloma. RBC is slightly lower..will be tested again in March. Trying to enjoy each day albeit the fatigue is limiting.

I am sorry your father died of multiple myeloma. One of my friends died recently of this same disease. I could get this too from what is being told to me by doctors. My Kappa LC is high, but all my other blood work is just fine. I am not tired, no night sweats, no weight loss (I could use it). I don't know what is going on with me. No family with multiple myeloma and I have researched the family tree. One of my friends has MM and also high Kappa LC and her doctor put her on medication to lower it. Is this a possibility? My diagnosis also says MGUS. I wish I knew what was happening to me.

@bocky
Greetings and welcome to Mayo Clinic Connect.
I would like to share a link with you which you may have already found, since you found this group.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
It’s always disturbing when you hear that MGUS is a condition that precedes Multiple Myeloma. The important distinction is that all Multiple Myeloma patients first have MGUS, not all MGUS patients get Multiple Myeloma. In fact, the chance of progression is very low, generally about 1% a year.
Typically, unless a MGUS patient’s numbers meet a high threshold, MGUS is not treated.
MGUS is not cancer, but is best treated by a hematologist/oncologist who has experience treating Multiple Myeloma. Your doc will order blood tests at regular intervals such as every three to six months. Sometimes less often if your numbers are very low.
People generally have lots of questions about numbers and blood test results. It’s really good to have that discussion with your physician. Although there’s some very experience members in this could give you a pretty good indication, I think it’s important to look at coexisting conditions, and other issues that might Require more scrutiny. Age, overall general health are also considerations. I always make it a practice to write my questions down ahead of time so I don’t forget, and I even haul someone along with me because I think it’s pretty normal to be a little uptight about that meeting and I tend to forget sometimes what I’ve been told. I was diagnosed three years ago and my numbers have been very stable. I see my hematologist/oncologist every six months now. I am 72 and I have type 2 diabetes as well as MGUS. I’m otherwise pretty healthy. I try to eat well, get my sleep, stay active and avoid alcohol and sugar. I guess that’s redundant. 😉
Have you had a chance to meet with your doctor and ask your questions?

Thank you for all the great information regarding MGUS. Most of my blood work is good but the Kappa LC is high, so I think that is why I am concerned. I asked questions when I saw her last Thursday but of course you never think of all you want to know until you get home. I will make a list of questions for the next appointment which will be in six months. Also, a friend thinks I should have a PET scan. I am sure, or at least I think I am, that the doctor would have ordered that if it was needed don't you think? Thank you also for the link.

I met with a Cancer PA. I asked questions but there are always more that pop up that you did not think to ask. All my blood work is good except for Kappa Free LC which is 45 but has not changed in six months. What has me concerned is a girlfriend, much younger than me, has a Kappa Free LC number higher at 62 and she developed Multiple Myeloma. She was very insistent that there was medication that could bring my number down. She also wanted me to get a Pet Scan saying she didn't want me to go through what she did. Now I heard from her family that her Cancer has gone into her leg. I am really scared, and everyone says, oh don't worry, you are fine, but am I? I have other issues leading to not breathing well and of course high cholesterol, but this blood protein is a real concern for me.
Thank you for your suggestions. I will write down my questions. My daughter did go with me but has since dropped the practice. I have been referred to a school hospital for the damage in my lungs due to GERD and hiatal hernia. Getting old is no fun.

@bocky
“Getting old is no fun.” Indeed! I feel that!
One of the things that has helped me the most is finding the right physician who is a good match with me. I didn’t get my first choice from all the recommendations of trusted friends, but after seeing this hematologist/oncologist two or three times I felt very confident in his knowledge and, his investment in my health. That made all the difference. I stopped reading everything I could get my hands on on the Internet and instead, writing down my questions and asking them of him. He tells me what he thinks, but then he also tells me about the studies and data that support his opinion. I like data.
Do you want a physician to work with you who treats multiple myeloma on a daily basis, not someone who has a general practice. A general practitioner may have some experience, but if you were getting a surgery or colonoscopy, you would want someone that does many of these procedures every week, not someone who does the procedures three or four times a year. Sometimes the generalists ego gets in the way I believe. They are reluctant to refer to a specialist. That’s a big red flag for me.
Although your friend progressed to multiple myeloma, that doesn’t mean you will. They not only look at your cap and numbers, but they will also look at the ratio and other health concerns. A hematologist/oncologist is going to look for signs that there is progression. They may do a bone marrow biopsy and, they will do scans to make sure that your bones are free of lesions that are a telltale sign. That’s why your friend suggested the scan. I get scans and blood draws every six months.
Especially since you have a friend who had a bad experience, it will make you anxious until you get some definitive answers. One of the questions that I asked that was helpful “at what point Will you begin to treat me? What would my numbers look like that you believe would be the threshold for progression?”
You have to advocate for what you need. As soon as you leave the doctors office, they move onto the next patient. It’s important that you tell them what you need and gently move them along until you get it or they explain to you a logical reason why you cannot have what you want.
I’m sorry that your daughter has stopped going with you. Do you think you could ask her to accompany you again?