1. < Blood Cancers & Disorders

I have polycythemia: Your thoughts on new test results?

Posted by vitalbarb @vitalbarb, Dec 10, 2024

I have polycythemia. Recent high protein levels showed the need for more testing for other blood dyscrasia. New tests show IgA 551 high, Free Kappa lt chains 39.8 high, Beta Globulin 1.5 high. Any thoughts? Waiting to hear. I have celiac, type 1 diabetes and myasthenia gravis. I am 69 years woman.
Thank you so much.

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kayabbott | @kayabbott | Dec 11, 2024

I'm a 70 yo woman with celiac (15 years), brand new stage 3a chronic kidney disease, and MGUS (8 years). So far none of these limit me. They likely will give you blood and DEXA (bone scans) for MGUS. Elevated immunoglobulin IgA is an inflammation marker, as is Beta Globulin. My IgA Kappa free light chain of 300 mg/L and IgA of 376 is associated with MGUS. Some people have Lambda free light chain or other brands of MGUS. MGUS is asymptomatic and has a 1%/year risk of progressing to multiple myeloma so for most people it stays as asymptomatic MGUS. https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

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1 reply
vitalbarb | @vitalbarb | Dec 11, 2024

Thank you so much! We are quite similar with history of autoimmune disease. My GfR varies around 60. Type 1 diabetes and celiac share genes and the myasthenia gravis also autoimmune.
I really really appreciate your explanation - which has put my mind at ease. Our similar issues make so much sense with the IgA Kappa and IgA and Beta Globulin. My brother had multiple myeloma.
Wishing a Happy Healthy Holiday Season and best wishes for a Wonderful New Year!

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2 replies
kayabbott | @kayabbott | Dec 11, 2024
In reply to @vitalbarb "Thank you so much! We are quite similar with history of autoimmune disease. My GfR varies..." + (show)
@vitalbarb

Thank you so much! We are quite similar with history of autoimmune disease. My GfR varies around 60. Type 1 diabetes and celiac share genes and the myasthenia gravis also autoimmune.
I really really appreciate your explanation - which has put my mind at ease. Our similar issues make so much sense with the IgA Kappa and IgA and Beta Globulin. My brother had multiple myeloma.
Wishing a Happy Healthy Holiday Season and best wishes for a Wonderful New Year!

Jump to this post

Best wishes to you as well. My GfR varies around 50. MGUS is more common with people with celiac (and older folk), but otherwise no know cause and effect. As with our various autoimmune diseases, MGUS is a waiting game. So focusing on healthy diet, exercise, avoiding stress, and having things to look forward to is important. I refer to celiac as a vocally transmitted social disease; there is some isolation with not always being able to eat with friends so I joined groups that accept my dietary restrictions.

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dh9 | @dh9 | Dec 11, 2024
In reply to @vitalbarb "Thank you so much! We are quite similar with history of autoimmune disease. My GfR varies..." + (show)
@vitalbarb

Thank you so much! We are quite similar with history of autoimmune disease. My GfR varies around 60. Type 1 diabetes and celiac share genes and the myasthenia gravis also autoimmune.
I really really appreciate your explanation - which has put my mind at ease. Our similar issues make so much sense with the IgA Kappa and IgA and Beta Globulin. My brother had multiple myeloma.
Wishing a Happy Healthy Holiday Season and best wishes for a Wonderful New Year!

Jump to this post

I have MGUS .
M spike almost two years
IgG low
Osteoporosis
Reading others 'stories' helpful
Happy Holidays

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1 reply
vitalbarb | @vitalbarb | Dec 17, 2024
In reply to @kayabbott "I'm a 70 yo woman with celiac (15 years), brand new stage 3a chronic kidney disease,..." + (show)
@kayabbott

I'm a 70 yo woman with celiac (15 years), brand new stage 3a chronic kidney disease, and MGUS (8 years). So far none of these limit me. They likely will give you blood and DEXA (bone scans) for MGUS. Elevated immunoglobulin IgA is an inflammation marker, as is Beta Globulin. My IgA Kappa free light chain of 300 mg/L and IgA of 376 is associated with MGUS. Some people have Lambda free light chain or other brands of MGUS. MGUS is asymptomatic and has a 1%/year risk of progressing to multiple myeloma so for most people it stays as asymptomatic MGUS. https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362

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Hi. Did you have M-spike in the beginning? Or did it develop later on? My doctor agreed with all the autoimmune issues. Thanks again

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1 reply
kayabbott | @kayabbott | Dec 18, 2024
In reply to @vitalbarb "Hi. Did you have M-spike in the beginning? Or did it develop later on? My doctor..." + (show)
@vitalbarb

Hi. Did you have M-spike in the beginning? Or did it develop later on? My doctor agreed with all the autoimmune issues. Thanks again

Jump to this post

My brand of MGUS doesn't have much of an M spike. It took about 5 years for the M protein to be detectable, but it is still small. I have IgA Kappa MGUS.

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1 reply
vitalbarb | @vitalbarb | Dec 18, 2024
In reply to @kayabbott "My brand of MGUS doesn't have much of an M spike. It took about 5 years..." + (show)
@kayabbott

My brand of MGUS doesn't have much of an M spike. It took about 5 years for the M protein to be detectable, but it is still small. I have IgA Kappa MGUS.

Jump to this post

Thanks!! That's what I expect as well.

Happy Holidays!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 23, 2024
In reply to @dh9 "I have MGUS . M spike almost two years IgG low Osteoporosis Reading others 'stories' helpful..." + (show)
@dh9

I have MGUS .
M spike almost two years
IgG low
Osteoporosis
Reading others 'stories' helpful
Happy Holidays

Jump to this post

@dh9, just want to drop by to say welcome. How long have you been living with MGUS? What, if anything, did you change when you learned of your diagnosis? How are you doing?

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