Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4 7:19pm

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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

@mjlandin Welcome to Mayo Clinic Connect.

There are several discussions here in the Blood Cancer & Disorder group that speak about MGUS:
https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/
https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/
From the Mayo Clinic website is this information: https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

From the International Myeloma Foundation is this very informative article: https://www.myeloma.org/what-are-mgus-smm-mm

For my case, I was diagnosed with MGUS thanks to an observant nephrologist [kidney disease unrelated to MGUS]. It then advanced to smoldering multiple myeloma, in a short time, which is very unusual, and in a year advanced to multiple myeloma, again unusual. I will say my health journey has never been normal, so why should I stop now? The vast majority of people live for years with MGUS and no further complications, going through quarterly or semi-annual bloodwork for monitoring values.

Feel free to ask away!
Ginger

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Hi @mjlandin
I was diagnosed with MGUS last July via standard tests related to Neuropathy.
M-Spike on serum electrophoresis of 0.2 and IgG kappa but with normal hemoglobin and normal serum free light chain ratio. I will continue to have blood tests every 6 months per my Hematologist. About 5% of adults over 65 have MGUS per Mayo Clinic study and only about 1% per year will progress to MM. I don’t worry about this condition at the moment since there is nothing that can be done to treat it or reduce the odds to migrate to SMM or MM.

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Many of us are doing watchful checkups with hematologists we like. (First I found four I didn’t like.) My IgM Kappa MGUS was diagnosed in 2015. It continues to gradually elevate while being said to be stable.

In researching online it is important not to gain weight, to prevent progression to SMM or MM I’ve read. My all-time highest weight was when it was first diagnosed. Now working on that and weigh 8% less.
Also try to avoid fats. Since Mayo Clinic was the first in the world to diagnose it, find their online peer reviewed research about MGUS and learn more. Don’t be taken aback by medical language, just keep going. Life is an adventure!

One important caveat, MGUS may change the way your body reacts to vaccines. After 4 Modernas (2+2) my body has consistently tested as being immunocompromised. Ouch! That is the worst thing about this diagnosis so far. I’m staying well, but sequestering as though unvaccinated. Missing usual social life, but continuing to connect in other ways. Suggest getting your immunity checked. Wishing you well!

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Hi I was just diagnosed I have so many ? My doctor order much more lab & X-ray so I guess I’ll know more after those results.

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@crsazbound

Hi I was just diagnosed I have so many ? My doctor order much more lab & X-ray so I guess I’ll know more after those results.

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@crazbound Welcome to Mayo Clinic Connect! So many of us can definitely relate to having a lot of questions when we first get a surprise diagnosis.

I'm glad to hear you are going to have more testing done to narrow down exactly what is going on. In the meantime, here is some information you can read up on:
From Mayo Clinic's website related to MGUS: https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
And from the Internaltional Myeloma foundation website: https://www.myeloma.org/what-are-mgus-smm-mm

And, as my oncologist always tells me, please don't spend a lot of time "Dr. Googling"! It is so easy to get wrapped up in many unrelated topics, scaring yourself, and thinking the worst. Be gentle on yourself. Wait to see what test results come back, and discuss them with your doctors. MGUS can stick around for a long time and never progress beyond that. It's important to remember that, okay?

Let me know if you have questions! We're here to help.
Ginger

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Yes, my IgM kappa MGUS, also named paraptoteinemia, was diagnosed in 2015. My blood gets special tests from a hematologist I like every six months. There are probably lots of others with varieties of MGUS out there who have not been diagnosed. We just carry on and keep living our lives.
You may want to get your covid vaccine immunity checked.

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I also have MGUS diagnosed 12 years ago. Everything has been pretty good numbers increasing slowly until this last year. IGA went up over 1,000 points . IGM had dropped a little but no lieasons. Just go on with a positive outlook .

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News regarding What To Do if your covid immunity is low: My fairly stable but gradually increasing IGM kappa MGUS of 7 years apparently led to low response to covid vaccines. Moderna 2+2 was ineffective. Due possibly to a number of co-morbidities, I was accepted to receive Evusheld yesterday. Total 600ml of two related formulations, one in each side of my behind. All went well. That should keep me from needing to sequester as much for the next six months when it will be necessary to repeat this regimen.

Suggest asking your doc to check your covid immunity to determine if you may be a candidate for this new vaccine. Warning: it IS new. At otherwise high risk, I went through with it. So far, so good!

Good luck White Pine and everyone!

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@raye

News regarding What To Do if your covid immunity is low: My fairly stable but gradually increasing IGM kappa MGUS of 7 years apparently led to low response to covid vaccines. Moderna 2+2 was ineffective. Due possibly to a number of co-morbidities, I was accepted to receive Evusheld yesterday. Total 600ml of two related formulations, one in each side of my behind. All went well. That should keep me from needing to sequester as much for the next six months when it will be necessary to repeat this regimen.

Suggest asking your doc to check your covid immunity to determine if you may be a candidate for this new vaccine. Warning: it IS new. At otherwise high risk, I went through with it. So far, so good!

Good luck White Pine and everyone!

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We believe that my numbers increasing may have to to Covid. I have all 2+2 available but still had Covid in February, lucky a mild case. Ratio shot up and so didn't everything else. The oncologist told my it is no longer if but when I transition to MM. So now blood draw every three months rather than every six months. The waiting game is difficult so I keep very busy and am grateful that I feel great.

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@whitepine66

We believe that my numbers increasing may have to to Covid. I have all 2+2 available but still had Covid in February, lucky a mild case. Ratio shot up and so didn't everything else. The oncologist told my it is no longer if but when I transition to MM. So now blood draw every three months rather than every six months. The waiting game is difficult so I keep very busy and am grateful that I feel great.

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That seems really pessimistic of your oncologist to project on you that the worst will definitely happen. I would look for a different doctor. Can you find one who specializes in blood disorders? A hematologist? I found one I liked after rejecting the first four! Yes, that’s what it took to find one I like. He tests the same and additional of related blood tests. He helped make it possible for me to get Evusheld injections. Now I will feel safer to venture out. Yes, I’ll continue wearing a 3M N95 Aura mask when I do. So glad to have found them at Home Depot.

Remember you are the ultimate boss of what physicians you choose to follow. There’s power in that thought! Wishing you well in your quest to find a doc worthy to encourage and guide your journey forward. Be of good cheer! Onward!

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@whitepine66

We believe that my numbers increasing may have to to Covid. I have all 2+2 available but still had Covid in February, lucky a mild case. Ratio shot up and so didn't everything else. The oncologist told my it is no longer if but when I transition to MM. So now blood draw every three months rather than every six months. The waiting game is difficult so I keep very busy and am grateful that I feel great.

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Welcome, @whitepine66. Yes, the waiting game is rough. Even if your MGUS develops into MM (or when as your oncologist prepared you for), treatment may still be watch and wait for a time. Enjoy feeling great and continue to do the things that bring you joy. What keeps you busy and brings you joy?

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@whitepine66

We believe that my numbers increasing may have to to Covid. I have all 2+2 available but still had Covid in February, lucky a mild case. Ratio shot up and so didn't everything else. The oncologist told my it is no longer if but when I transition to MM. So now blood draw every three months rather than every six months. The waiting game is difficult so I keep very busy and am grateful that I feel great.

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I find every three months pretty reassuring. Have my next batch in July so we’ll see. I’m not a very good watch and wait person generally speaking. So I think six months would cause me some anxiety.

I find that this mind-body connection thing is the real deal. If you are anxious and worried then you’re not going to feel good. Try and keep your head in the game of life and do things you enjoy. It really does make all the difference.
When I get anxious, and I try to remember that people live for a long time with MGUS And most times the diagnosis is made because people are being checked out for something totally unrelated. So you won’t have significant symptoms and you’ll feel good. If I’m going to have something… I feel pretty lucky. This does not have to advance to smoldering multiple myeloma or multiple myeloma. The statistics are reassuring.

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