I was diagnosed with MGUS in 2005 at the age of 41. I had an M-spike of 0.5 g/dL (5 g/l) and elevation of my IgG protein.
2009:
The M-spike had progressed to .62 and a rise in the IgG numbers.
2014:
M-spike is now 1.18 g/dL;
IgG 1890 mg/dL (continues to rise);
IgA 67 mg/dL (has gone down);
IgM 58 mg/dL (has gone down);
Total protein electrophoresis 7.6 g/dL;
Kappa light chain, free, serum 407 mg/dL;
Lambda light chain, free, serum 1280 mg/dL;
K/L light chain ratio, free, serum 7;
Bone marrow shows 5% plasma cells and no abnormal chromosomes.
My oncologist continues to believe there is an autoimmune component involved with these findings, in addition to the diagnosis of MGUS. I was diagnosed in my early 20's with Hashimoto's thyroiditis (autoimmune) and later diagnosed with insulin resistant diabetes. I have widespread, whole-body degenerative arthritic changes but no bone lesions associated with multiple myeloma.
I've seen a few different rheumatologists in the past and have been given a variety of "names" for my arthritic conditions, from rheumatoid arthritis to osteoarthritis to fibromyalgia, yet there has been no positive lab results to support any of those conditions.
I saw a new rheumatologist at the recommendation of my oncologist and more blood tests have been ordered. However, she was relatively vague in her thoughts on the matter and didn't think a specific "name" could be assigned based on the variety of other conditions being present, including aging and weight gain.
I'm wondering how common it is for MGUS to be associated with autoimmune diseases, and what is best to do, and not to do, when that's the case.
Susie
Forums
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: MGUS with autoimmune diseases
Hi Suzie, My wife was diagnosed with MGUS in 2010 at the age of 54. Her M spike was 0.89. Because her father died of multiple myeloma in 1988, it was recommended she get a bone marrow biopsy and aspirate. For the past four years her M-spike has ranged from 0.89 to 0.60. All of her other markers are in range. She gets her blood tested every 3 months.
The reason I am telling you this is because, like you, she was being treated for Hashimoto's when the endocrinologist did an electrophoresis and found the paraprotein. She has also had psoriasis since she was 15. I often wonder if the autoimmune issues are what's causing the M-spike.
From what I've read there seems to be some confusion as to if this will progress to malignancy. They always say that 3 percent of the general population over 50 have an M spike. So that's over 9 million people who may not know that they have this. I wonder if a large portion of people have M spikes because of autoimmune problems that are totally benign.
Good luck, Joe
The reason I am telling you this is because, like you, she was being treated for Hashimoto's when the endocrinologist did an electrophoresis and found the paraprotein. She has also had psoriasis since she was 15. I often wonder if the autoimmune issues are what's causing the M-spike.
From what I've read there seems to be some confusion as to if this will progress to malignancy. They always say that 3 percent of the general population over 50 have an M spike. So that's over 9 million people who may not know that they have this. I wonder if a large portion of people have M spikes because of autoimmune problems that are totally benign.
Good luck, Joe
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Joe
Re: MGUS with autoimmune diseases
Hi Joe!
Thank you for your post and information about your wife.
Sometimes I think I'm chasing ghosts with this whole thing! MGUS is confusing enough and so few medical people really understand it to begin with, then add in a "gray area" with autoimmune and it gets really muddy!
It was pretty hard to digest when the newest rheumatologist suggested that I'm dealing with the normal aging "wear and tear" that happens. Yes, I'm 50 and I'm aging, but there are plenty of 50 year olds who aren't "wearing and tearing" like this! It is NOT normal in my thinking. And all of my MGUS levels are continuing to march along and not hold steady, so that has to mean something, too. I am very curious to see where this whole journey leads.
Best of luck to your wife and to you too, as you journey into these uncertain waters. God bless!
Susie
Thank you for your post and information about your wife.
Sometimes I think I'm chasing ghosts with this whole thing! MGUS is confusing enough and so few medical people really understand it to begin with, then add in a "gray area" with autoimmune and it gets really muddy!
It was pretty hard to digest when the newest rheumatologist suggested that I'm dealing with the normal aging "wear and tear" that happens. Yes, I'm 50 and I'm aging, but there are plenty of 50 year olds who aren't "wearing and tearing" like this! It is NOT normal in my thinking. And all of my MGUS levels are continuing to march along and not hold steady, so that has to mean something, too. I am very curious to see where this whole journey leads.
Best of luck to your wife and to you too, as you journey into these uncertain waters. God bless!
Susie
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: MGUS with autoimmune diseases
Thank you Susie,the only thing I can suggest is a gluten free diet. My wife has an IgG kappa spike and, when first diagnosed, her IgG level was 1983. Her most recent bloodwork showed an M-spike of 0.60 and an IgG serum level of 1515mg /dl.
I don't know if it's a coincidence, but her levels all came down after decreasing her glutens. I am no doctor, but I just have a gut feeling that people like you and her with autoimmune conditions have chronic inflammation. She also takes curcumin.
Please try not to worry about your numbers rising. They are still on the low side. I know it's not easy, this damn disease can rip your life apart. Take care of yourself, Joe.
I don't know if it's a coincidence, but her levels all came down after decreasing her glutens. I am no doctor, but I just have a gut feeling that people like you and her with autoimmune conditions have chronic inflammation. She also takes curcumin.
Please try not to worry about your numbers rising. They are still on the low side. I know it's not easy, this damn disease can rip your life apart. Take care of yourself, Joe.
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Joe
Re: MGUS with autoimmune diseases
Hi Susie - I was diagnosed with IgG MGUS fall of 2011 with an initial spike of 1.5. Like you, I have Hashimoto's and take Synthyroid. According to my endocrinologist, she has several 'thyroid' patients with MGUS. I know of another woman who also has Hashimoto's and MGUS.
I've read so many posts and still don't understand the relationship between the spike and serum. For instance, all of my tests were at LabCorp and the serum stays between 1620-1630mg/dL, but the spikes have gone from 1.5 to the current spike of 0.9. Had a bone BMA [bone marrow aspiration] and have 5% plasma cells and trisomic 7.
Doesn't appear a ratio exists between the spike and serum. Or, which one is more important. I thought as the spike decreased so would the serum.
Such weird disorder with so many variables. I honestly don't feel any different since diagnosed with MGUS except for the stress of the annual blood test.
Diane
I've read so many posts and still don't understand the relationship between the spike and serum. For instance, all of my tests were at LabCorp and the serum stays between 1620-1630mg/dL, but the spikes have gone from 1.5 to the current spike of 0.9. Had a bone BMA [bone marrow aspiration] and have 5% plasma cells and trisomic 7.
Doesn't appear a ratio exists between the spike and serum. Or, which one is more important. I thought as the spike decreased so would the serum.
Such weird disorder with so many variables. I honestly don't feel any different since diagnosed with MGUS except for the stress of the annual blood test.
Diane
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Dianem
Re: MGUS with autoimmune diseases
Hi Diane.
Sounds like we have some things in common! I found my initial labs from 2005 and can start trending things.
IgG started at 879 and is now up to 1890.
IgA started at 114 and now down to 67.
IgM started at 71 and now down to 58.
M-spike started at 0.5 and up to 1.18.
My doctor said he didn't like that my bad guys (IgG) are on the rise and starting to take over the other proteins. I never had my light chains reviewed until this past month and I have higher lambda light chains. I get blood tests again in November.
I suppose this is a lesson in patience. Something is clearly going on, but until it becomes known, I need to stay the course, keep smiling and never stop learning. I wish you the best in your adventure as well! Blessings!!!
Susie
Sounds like we have some things in common! I found my initial labs from 2005 and can start trending things.
IgG started at 879 and is now up to 1890.
IgA started at 114 and now down to 67.
IgM started at 71 and now down to 58.
M-spike started at 0.5 and up to 1.18.
My doctor said he didn't like that my bad guys (IgG) are on the rise and starting to take over the other proteins. I never had my light chains reviewed until this past month and I have higher lambda light chains. I get blood tests again in November.
I suppose this is a lesson in patience. Something is clearly going on, but until it becomes known, I need to stay the course, keep smiling and never stop learning. I wish you the best in your adventure as well! Blessings!!!
Susie
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: MGUS with autoimmune diseases
Diane and Susie
Late post. Hope you see this.
My trending results are similar to yours.
Diagnosed with MGUS in 2009 when investigating peripheral neuropathy.
M spike when from 0.3 to 1.1
IgG went from 1073 to 1754
IgA went from 213 to 104
IgM went from 62 to 28
Kappa Light ch from 1.17 to 0.61
Lambda light chain from 1.46 to 1.42
I am concerned about this trending and went to a myeloma specialist. My BMB showed 5% PC and my bone marrow aspirate showed 11% so now I have been bumped up into the smouldering category.
I am the poster child for autoimmune diseases. I have had several AIDs including Meniere's disease which took my hearing from me. I have had uevitis multiple times and now I am dealing with sicca, dry mouth and eyes. (Mostly likely Sjogren's but my ab were negative so cannot get a definitive diagnosis). Susie I was curious as to why your doctor thinks you have an autoimmune component evident in your lab results.
I am doing a gluten free diet and avoiding those food and drink considered inflammatory. Avoiding sugar has helped greatly with arthritis in my knuckles. I also have had digestive issues and am trying to get rid of my "leaky gut" with diet and supplements. I tried curcumin but it worsened by digestive problems so I dropped it. Darn! I am going to a doctor versed in fundamental medicine soon for workup of GI.
Good luck to you both in the future.
Debbie
Late post. Hope you see this.
My trending results are similar to yours.
Diagnosed with MGUS in 2009 when investigating peripheral neuropathy.
M spike when from 0.3 to 1.1
IgG went from 1073 to 1754
IgA went from 213 to 104
IgM went from 62 to 28
Kappa Light ch from 1.17 to 0.61
Lambda light chain from 1.46 to 1.42
I am concerned about this trending and went to a myeloma specialist. My BMB showed 5% PC and my bone marrow aspirate showed 11% so now I have been bumped up into the smouldering category.
I am the poster child for autoimmune diseases. I have had several AIDs including Meniere's disease which took my hearing from me. I have had uevitis multiple times and now I am dealing with sicca, dry mouth and eyes. (Mostly likely Sjogren's but my ab were negative so cannot get a definitive diagnosis). Susie I was curious as to why your doctor thinks you have an autoimmune component evident in your lab results.
I am doing a gluten free diet and avoiding those food and drink considered inflammatory. Avoiding sugar has helped greatly with arthritis in my knuckles. I also have had digestive issues and am trying to get rid of my "leaky gut" with diet and supplements. I tried curcumin but it worsened by digestive problems so I dropped it. Darn! I am going to a doctor versed in fundamental medicine soon for workup of GI.
Good luck to you both in the future.
Debbie
Re: MGUS with autoimmune diseases
Hi Debbie -
Read your post and hope the diet helps. What is the plan with smoldering? Is it a watch and wait like MGUS? What does your doctor think about the trending you mentioned? I wish there was a real therapy for MGUS. Yes, I take one green tea and one curcumin capsule / day, but unclear if it really helps.
My first M spike was 1 in Oct 2011, but at the repeat test it was 1.5. Just got results from annual blood test and now spike at 0.8. I was supposed to see my oncologist to go over results, but was canceled so don't know other numbers yet.
Good luck - Diane
Read your post and hope the diet helps. What is the plan with smoldering? Is it a watch and wait like MGUS? What does your doctor think about the trending you mentioned? I wish there was a real therapy for MGUS. Yes, I take one green tea and one curcumin capsule / day, but unclear if it really helps.
My first M spike was 1 in Oct 2011, but at the repeat test it was 1.5. Just got results from annual blood test and now spike at 0.8. I was supposed to see my oncologist to go over results, but was canceled so don't know other numbers yet.
Good luck - Diane
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Dianem
Re: MGUS with autoimmune diseases
Looking for info on autoimmune and MGUS. There is no research on this that I have found.
Ginger
Ginger
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Ginger
Re: MGUS with autoimmune diseases
Hello,
I was diagnosed with MGUS in 2007. I am now age 47. My IgG levels are always high and fluctuate. When it went down to 1765 a year ago, I was praying it be a sign that maybe my MGUS would go away, but it hasn't. My last IgG labs in September 2014 went back up to 1900.
With some hope, I too, was told by my oncologist and another second opinion oncologist / hemotologist that they believe my having MGUS is due to my inflammatory conditions / autoimmune. I was diagnosed with fibromyalgia, alopecia areata, and I have thyroid issues.
Additionally, I was told by a new RA doctor that having both MGUS and polyclonal gammopathy is "better" than MGUS alone. I am not sure why this particular doctor believes, this so I will have to ask him.
So far my x-rays, MRI's, and CAT scans show no lesions or cancers, so I hope the best and I certainly wish all the rest the best for good and improved health when dealing with MGUS.
Hope this helps.
I was diagnosed with MGUS in 2007. I am now age 47. My IgG levels are always high and fluctuate. When it went down to 1765 a year ago, I was praying it be a sign that maybe my MGUS would go away, but it hasn't. My last IgG labs in September 2014 went back up to 1900.
With some hope, I too, was told by my oncologist and another second opinion oncologist / hemotologist that they believe my having MGUS is due to my inflammatory conditions / autoimmune. I was diagnosed with fibromyalgia, alopecia areata, and I have thyroid issues.
Additionally, I was told by a new RA doctor that having both MGUS and polyclonal gammopathy is "better" than MGUS alone. I am not sure why this particular doctor believes, this so I will have to ask him.
So far my x-rays, MRI's, and CAT scans show no lesions or cancers, so I hope the best and I certainly wish all the rest the best for good and improved health when dealing with MGUS.
Hope this helps.
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