I was diagnosed with MGUS about a year ago. They have been screening with labs. I’ve noticed some MGusers have bone marrow tests and some don’t. Is there a criteria we should know about?
😊 Thank you
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I have just been diagnosed with MGUS and have been reading up on it before my first hem visit next week. There is a new study out of Dana Farber showing very high correlation between MGUS and coronary events like MI or stroke. Has anyone had these results discussed with them or their treatment changed in any way? The doctor at DF is well-respected Dr Ghobrial. Thank you for sharing your information with this group.
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@nolarn Welcome to Mayo Clinic Connect! So many of us who are diagnosed with MGUS find out when our team may be looking for something else that seems to be going on with us. Back in 2017 when my hematologist told me about my MGUS, I wonder if there was any information like you shared, available, since no one ever said anything! Now that it has morphed into active multiple myeloma, there has been no discussion about cardiac nor stroke issues.
How did you find the study? You must be well-versed on research!
Good morning everyone!
I just found out I have MGUS not from the bone doctor that did my blood work & Dexa scans but thru my investigation.
The specialist has never talked to me about the abnormal blood results instead when I was reviewing my online test results I noticed it was abnormal & called his office for explanation. His nurse said he told me not to worry about it! So thankful my primary care doctor when I asked him to review was concerned & ordered more tests.
I'm also thankful I found this site to get some personal guidance along with the medical as I'm overwhelmed & disheartened at finding out I have MGUS.
Complete blood count, complete metabolic panel, free light chain, electrophoresis. Sorry you have this. I got it from Pfizer covid vax.
Thank you I so appreciate your input. I had wondered if was related to Covid vaccine because I had heard that in some the vaccine could possibly mutate genes or cause issues. Is there any info you know of I could refer to about this?
Thank you again!
I’ve had MGUS since 2015: long before covid.
Subsequently I had two Modernas, then three Moderna boosters. Of those the most recent was the bivalent booster. They did not seem to alter my MGUS status.
However MGUS seems to have interfered with my body’s immune response to vaccines. For that reason I received Evusheld infusions. I’m due for the next and have a BIG QUESTION: does it make sense to get Evusheld every six months when the virus variants for which it used to be effective have mutated on?
@raye Just yesterday I had an appointment with my oncologist. We spoke about Evusheld – I have had two doses. We will wait to see what the FDA is recommending come Feb when my six month window opens up again.
As for your body's response to vaccines. I have the same issue, when dealing with my autoimmune conditions. In fact, I am undergoing another round of Hepatitis B vaccines because I never developed antibodies in 2017 when I went through a vaccine series.
@aaamadre Has your medical team told you and confirmed you now have MGUS as a result of a covid vaccine?
Thank you, dear Ginger.
I’m due to get my second Evusheld in two weeks. A friend with CLL was advised to wait “until January” to see what “the news” about it will be at that time. My primary recommends staying on it. Hematologist appointment will be just before and I’ll ask him.
So many questions including what does it mean, what is his Gestalt understanding, about my odd constellation of out-of-range blood tests. I google the various ones, but feel like I’m in a dark room with an elephant.
Thanks for mentioning Hep B. I need to get mine checked and wonder how my pneumonia innoculation can be checked also.
You are so wonderfully helpful. Thanks again! Hugs!
@raye I believe the Evusheld as it was developed, had in mind the Covid as it presented about a year ago. As we all know, there are so many variants now. I had a bivalent shot from Pfizer for Covid, and the Evusheld as added protection. In my mind, much like our annual flu shots, there just seem to be mutations of the basic virus each year. It may well indeed be that Covid will go that same way, with new variants every so often that may make protocols/certain vaccines obsolete. We'll be forced to take a look at what we can do to protect ourselves as immune-compromised individuals, and it may be a real case-by-case thing.
Back in 2017, I got a Hep B series, as my husband's kidney transplant team notified him of an issue they thought was from the deceased donor of his kidney. Turned out it was the other recipient who had an issue. But I campaigned for the vaccine for myself. While getting set up for dialysis, they ran a Hep B panel and found I had no antibodies, so we are now repeating the series. For those with compromised renal function, apparently the protocol is 3 doses a month apart, then a 4th dose 2 months after 3rd one. They will rerun the panel to see if there are antibodies, and if there still are none, I will be listed as a "non-responder". Gee, thanks! ;))
Just got my pneumonia and tetanus vaccines reupped, so pretty sure I am "good to go" for now. Owies to my arm!
It sounds like my case may be atypical but maybe not. In 2014 I was first told I had MGUS. They did did a good work up consisting of blood work, bone survey, CT scans but no biopsy. First every 6 months and then yearly I had blood work done. After 2016 it became undetectable ( was never told it was gone, just undetectable). Now 6 years later it is detectable again. I live in a different state just saw a new hematologist. He seemed concerned and wants a biopsy done. I am scheduled to have it in 3 days. Has anyone else had it become undetectable?
@veeteenc Welcome to Mayo Clinic Connect.
I have not experienced what you are going through right now. Perhaps your medical team has two different approaches to how they handle the situation, given it is two different doctors? It's good to get a baseline to start with now, in my humble opinion. This will tell you where you are at now.
As you have no doubt read here, MGUS can be a diagnosis that people live with and monitor for years, and never progress to anything else. The biopsy he speaks of will most likely be a bone marrow biopsy, using the ileac crest of the hip bone as the site for that procedure.
Will you let me know what the outcome is? Do you have any additional questions for me today?
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