Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

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?

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Profile picture for kaiti @kaiti

Hi,
I am 50 years old, I recently did a blood test that showed I had Band 1 Monoclonal IgG with lambda light chains 2.3g/L. My GP believes it to be MGUS. I have my first haematology appointment on Thursday. I also have prediabetes, kidney stones and an inflammatory skin condition, hidradenitis supporativa of which I have been on Humira the past 2 years. What should I ask the Haematologist?

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@kaiti hey Kaiti. Looks like you and I are the same! Any updates?

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Profile picture for ea1 @ea1

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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@ea1 hey there! I’ve just been diagnosed with the same number as you only I’m igg lambda. How are you doing? I’m envious of your lack of worry, how do you do it?!

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Profile picture for hsminc @hsminc

Yes I have MGUS; was diagnosed 23 years ago in 2002. It is truly a waiting game.
While my M spike and FLC lambda have gone up, they are reasonably stable. My previous Mayo hematologist (who retired) wanted bloods drawn every 3 months. My current hematologist is more relaxed about all of this and I have blood tests every six months now. After 23 years I do not get nervous anymore waiting for results,
I guess time will tell. I do not have symptoms that I know of.

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@hsminc thank you for your post. This is reassuring for me as I’ve just been diagnosed with:)

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Profile picture for Colleen Young, Connect Director @colleenyoung

@carolduggan, welcome. Using search terms MGUS and hives, I found these comments from other members:
https://connect.mayoclinic.org/search/comments/
How do you manage the hives when you experience an outbreak?

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@colleenyoung Thank you. I’m currently on 4 Zyrtec, 2 Zantac and 1 Singulair every day. When I have a lot of hives, I will take 1 or 2 Prednisone but I have Osteoporosis so I have to be careful how much I take. I was also doing Xolair injections every 28 days but since I’m still getting hives, my doctor wants me to do the injections every 14 days, once the insurance approves it that is.

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Profile picture for carolduggan @carolduggan

I was diagnosed with MGUS in 2014 when I was 47. In 2015, I developed chronic hives that lasted a year. In 2020 I had chronic hives again that lasted about a year and in March of this year I broke out again and am still dealing with them everyday. People with MGUS who have other symptoms and develop hives are diagnosed with Schnitzler Syndrome. My allergy specialist doesn’t think it’s related to my MGUS because I don’t have the other symptoms. I have never had hives until I was diagnosed with MGUS. I have been tested for autoimmune diseases and they all have come back negative. I am so frustrated that they can’t figure out what is causing my chronic hives. Does anyone else with MGUS have chronic hives and doesn’t have a diagnosis for them?

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@carolduggan, welcome. Using search terms MGUS and hives, I found these comments from other members:
https://connect.mayoclinic.org/search/comments/
How do you manage the hives when you experience an outbreak?

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Profile picture for Lori, Volunteer Mentor @loribmt

@vmpcay1977 Welcome to Mayo Connect! There are quite a few members in the forum who have been diagnosied with Monoclonal gammopathy of undetermined significance (MGUS) and many have the same questions that you have about the impact of diet in possibly slowing the progression.

Here are a couple of the links that I found regarding diet and MGUS.

MGUS diet: Any tips on food to enjoy or prevent progression?
https://connect.mayoclinic.org/discussion/mgus-bgus-diet/
What’s the science on diet and MGUS/SMM? https://connect.mayoclinic.org/discussion/whats-the-science-on-diet-and-mgussmm/

Being able to speak with other members with the same diagnosis can be so comforting. One more link for you…this is from a quick search of MGUS conversations! Please feel free to peruse the discussions and pop in with questions! https://connect.mayoclinic.org/group/blood-cancers-disorders/

Do you feel this all started the same time as the perimenopause?

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@loribmt Thank you so much for your response and comments. Of course, talking to people who suffer from the same thing is comforting, and it's good to share concerns and information. Thanks! Regarding your question, I couldn't specify that this diagnosis began with perimenopause, because this period started recently and I was diagnosed with MGUS in January 2023 by chance. I already had 0.8 mg of monoclonal protein, and during the semiannual checkups of the last two years, it hasn't increased yet 0,9mg. This makes me think it's something I've had for a while, if the curve has always behaved like it has the last two years since it was discovered. I hope it remains stable... God will provide.

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I was diagnosed with MGUS in 2014 when I was 47. In 2015, I developed chronic hives that lasted a year. In 2020 I had chronic hives again that lasted about a year and in March of this year I broke out again and am still dealing with them everyday. People with MGUS who have other symptoms and develop hives are diagnosed with Schnitzler Syndrome. My allergy specialist doesn’t think it’s related to my MGUS because I don’t have the other symptoms. I have never had hives until I was diagnosed with MGUS. I have been tested for autoimmune diseases and they all have come back negative. I am so frustrated that they can’t figure out what is causing my chronic hives. Does anyone else with MGUS have chronic hives and doesn’t have a diagnosis for them?

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Profile picture for vmpcay1977 @vmpcay1977

Hola, me diagnosticaron GMSI a principios de 2023 a los 45 años y con 3 niños chicos... me angustié muchísimo, me lo descubrieron de "casualidad" en un control anual ginecolófgico, era el destino, mi gineólogo no sabe aún por qué me pidió un estudio que fue lo que llevó a otros estudios... Luego, una vez diagnosticada la GMSI con hematóloga, empecé a controlarme cada 6 meses y está bastante estable 0,8-0,9mg. Alguien podría facilitarme información de qué actividades o alimentación sería ideal consumir para que la proteína M no aumente en sangre? Saben si hay algo que hacer si no se tienen síntomas? Cómo llevan ustedes esta enfermedad y los miedos a que progrese en una enfermedad maligna en sangre? Tienen información sobre el período de perimenopausia y la GMSI? Gracias!

Jump to this post

@vmpcay1977 Welcome to Mayo Connect! There are quite a few members in the forum who have been diagnosied with Monoclonal gammopathy of undetermined significance (MGUS) and many have the same questions that you have about the impact of diet in possibly slowing the progression.

Here are a couple of the links that I found regarding diet and MGUS.

MGUS diet: Any tips on food to enjoy or prevent progression?
https://connect.mayoclinic.org/discussion/mgus-bgus-diet/
What’s the science on diet and MGUS/SMM? https://connect.mayoclinic.org/discussion/whats-the-science-on-diet-and-mgussmm/

Being able to speak with other members with the same diagnosis can be so comforting. One more link for you…this is from a quick search of MGUS conversations! Please feel free to peruse the discussions and pop in with questions! https://connect.mayoclinic.org/group/blood-cancers-disorders/

Do you feel this all started the same time as the perimenopause?

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Hola, me diagnosticaron GMSI a principios de 2023 a los 45 años y con 3 niños chicos... me angustié muchísimo, me lo descubrieron de "casualidad" en un control anual ginecolófgico, era el destino, mi gineólogo no sabe aún por qué me pidió un estudio que fue lo que llevó a otros estudios... Luego, una vez diagnosticada la GMSI con hematóloga, empecé a controlarme cada 6 meses y está bastante estable 0,8-0,9mg. Alguien podría facilitarme información de qué actividades o alimentación sería ideal consumir para que la proteína M no aumente en sangre? Saben si hay algo que hacer si no se tienen síntomas? Cómo llevan ustedes esta enfermedad y los miedos a que progrese en una enfermedad maligna en sangre? Tienen información sobre el período de perimenopausia y la GMSI? Gracias!

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At the time of treatment my husband was 75 yrs old. He had 3 days of infusion for 4 months. 1st infusion slow and he was fine. The second month they had the infusion speed up and he reacted by shivering and they asked for a doctor who gave him a shot which stopped that reaction.The next two months his infusion was slow ( no reactions).
He only had high IGM that I am aware of. The count for IGM went from 1500 to 300 and has stayed in that normal range.
M

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