Have MGUS and just caught Covid: Did Covid affect your numbers?

@jdm02

I've been at an MGUS stage for about 15 years now. My mother died from MM at my age (67), in 1985. Was diagnosed in late 1983. I get my blood drawn every year to monitor things but was told by THE MM guy at the NIH years ago that he didn't think my MGUS would ever progress to active MM. Still, I wonder about the possibility every year around this time. I'm IgG kappa. Do you know if you've been classified as smoldering MM, kappa or lamda dominant? Have you had a bone marrow test to see if you have a high plasma cell count?

@jdm02

I've been at an MGUS stage for about 15 years now. My mother died from MM at my age (67), in 1985. Was diagnosed in late 1983. I get my blood drawn every year to monitor things but was told by THE MM guy at the NIH years ago that he didn't think my MGUS would ever progress to active MM. Still, I wonder about the possibility every year around this time. I'm IgG kappa. Do you know if you've been classified as smoldering MM, kappa or lamda dominant? Have you had a bone marrow test to see if you have a high plasma cell count?

@suppiskey2surv the lab detected 1 lone lamda. I understand this to be a lesser prognosis than kappa. However all my light chain results are in normal ranges.
My M-spike was .13 upon my dx. last May is decreased to .08. New results in Nov.
If I could ask any of you reading this: My 1st complaint for having MGUS (if that is the cause) I have had a lot of trouble sleeping. I’ve been using Melatonin & it has helped but the problem is definitely there for me. Any of you?
No plasma or bone biopsy or bone x rays as of yet. If my blood results significantly change then I would need to have these done. Bone biopsy is not fun from what I understand.

@jdm02

Ah, yes . . . MGUS, MGUS, MGUS.

For years, I've dealt with this goofy thing that I was told will ALWAYS be in my blood. At last check, in November, 2024 . . . my M-Spike was .07. So, sounds like we're in the same proverbial boat with this stupid stuff.

Years ago, it scared the you know what out of me . . . thus, the reason I sought an opinion from the expert MM guy at the NIH. A friend I met on-line (never, unfortunately, in person) told me about an MGUS study that this doc was doing out East for folks who had MGUS, yet no diagnosis of multiple myeloma. She was in the same study and suggested I write to him. So, I did because my mother died of it. I (obviously) was "concerned" and didn't know what it meant. PLUS, I was having a LOT of extreme bone pain at the time. They accepted me in the study and paid for my trip out there and for our hotel stay. I had had a bone marrow biopsy here, where we live, but they told me that my "numbers" were all too low to be causing me all the pain. I went home in tears, not sure what to do at that point. That's when I found out about the study. That NIH doctor told me, also, that all my numbers were too low to be causing all the pain. Did you know you can have smoldering MM, with low numbers and that one day things could be diagnosed with a bone marrow biopsy if those numbers were low? A bone marrow biopsy isn't as bad as you may think. It's pretty much the only way to really diagnose MM.

As part of the study he did a PET scan, blood work and a bone marrow biopsy of his own, which showed an uptick of plasma cells in my marrow . . . sooooo, he wanted me to come out East in 6 months. He repeated the scans and gave me his opinion that he didn't think my numbers would ever really lead to active MM; however, he said that I should return home and ask for yearly infusions of a bisphonate drug that may alleviate the pain. I went home and asked the oncologist I was seeing to consider the bisphonate drug. He agreed and prescribed yearly infusions of "Reclast". I had, I think, 6 courses of it which reduced my pain to a tolerable level. As part of the treatment they gave me . . . they discovered that I have a significant amount of osteoarthritis (supposedly non-cancerous) cysts and lesions up and down my spine. THAT, they say is the reason for all the bone pain. YES, I have pain pretty much ALL the time and have a great deal of trouble sleeping.

Hey . . . if you have any more questions about my MGUS journey, since this is getting ridiculously long . . . private message me. I will share, with you, anything else you'd like to know.

Dawn

@scalm I am on 2000 mg of Qunol Curcumin daily. Before I started, I checked with my oncologist, my PCP, who then referred me to their clinic staff pharmacologist and got approval from all of those people before starting the supplement. I have had success in lowering my numbers or at least keeping them stable. I’ve been doing this for a couple of years now.
There’s a lot to consider including other medications, coexisting conditions, and overall health before you start adding supplements.
I agree with you that there is probably very little one can do to forstall progression if the disease is determined.
I was diagnosed several years ago now and my anxiety is largely abated. When I do get anxious, I remind myself that the right of progression for MGUS is very slow. I am likely at 73, to succumb to something else.
Are you having any other symptoms that you could attribute to your MGUS?

@csrb7007 my 1st M-spike was .13 & decreased to .08 last May. Next blood test is next month.
I had Covid twice, a couple yrs. apart before dx of MGUS. My hematologist isn’t overly concerned at this time either.
My dx. came about from severe osteoporosis & an endocrinologist sent me to the hematologist when I had several low gamma globulin results. Which are now normal.

@pmm thank you for sharing this information. I’m 77. I was diagnosed one year ago. I take no other medication so I am going to look into this supplement. Also I will find out next week if my numbers are up I just had a follow up blood test Monday so it will be my one year follow up. I think I have underlying anxiety with this information. Also my neck and shoulders have to come to knots and I think that’s where my anxiety lies over this. My only thumbs from this are too I have some neuropathy and I have enormous fatigue. I’m one of those it’s rare but there it is. I have to lay it at the feet of this disease as I was the youngest 75 year-old you ever met and the last year has really aged me and slowed me down. But I keep moving forward and remain hopeful of that like you. It will be something else that takes me out. Hugs and again thanks for sharing this message

@jdm02
I have haf MGUS (various stages) for 23 years. I had Covid in 2021. I was totally asymptomatic but well vaccinated. (My house cleaners came with fulminating Covid!?!)
My free light chains (both) escalated more than 100 percent - both lambda and kappa. I never had kappa elevations before. My disease is IgG lambda - M spike around 1.5 - never changes and did not go up at all with the free light chain increases.

@hsminc I’m glad your M spike is stable. I wasn’t tested right after Covid but my numbers did go up when I had surgery in April. They calmed back down, however. I think there is some ebb and flow that just happens as our body reacts to whatever trauma it’s dealing with.
I hope you’ll continue to post how things are going for you. Will you let us know?

@pmm
Will certainly keep you posted. My lambda free light chains have escalated with each of my four joint replacement surgeries. They do ebb afterward but not as much as I would think - and want.
My hip replacement surgery was delayed cause of Covid - it was considered an elective surgery until they saw the xrays where the femur had actually broken off and I had avascular necrosis. I was in unbelievable pain, screaming whenever I walked five feet. It was a successful easy surgery with no pain whatsoever - neither post operatively or longer term. I was walking normally without a walker three days later. The free light chains decreased a whole after this surgery.
The shoulder replacement surgery under general anesthesia (the rest were regional anesthesia) escalated my lambda flc the most (. They have come down (270-220) but are still too high.
I do not know if these flc are all monoclonal or if there could be inflammatory polyclonal chains measured in there also. My hematologist insists they are monoclonal but I would like this tested. My husband is suspicious that the joint protheses interactions with my immune system could be a factor.
All my other chemistries and blood counts are stellar. There is no sign of anemia - quite the contrary. So I don’t know. I would like my polyclonal hypothesis checked out.