I have been reading a lot here, but this is my first message to the Forum.
I am looking for information/ feedback on my wife's condition. Are there any other tests to consider? Has anybody seen / read anything with a myeloma, neutropenia, and autoimmune connection?
Background before seeing a hematologist-oncologist:
Ten years ago, she was diagnosed with Meniere's disease by an ear, nose, and throat specialist (ENT), with severe dizziness every few days, but this has subsided to once every three months. Seven years ago, her neurologist found two nickel-size white lesions (sclerosis) on a brain MRI. Two comparative MRIs about 18 months apart subsequently showed no changes in the lesions. She does not have any multiple sclerosis symptoms, other than fatigue. Spinal tap in 2009 was normal, but she has peripheral neuropathy with her hands and feet. All blood tests were normal except for a paraprotein of 0.2 g/dL (2 g/l) identified in 2012. In the summer of 2015, with a paraprotein of 0.4 g/dL, her neurologist found her neutrophils (ANC) in her white blood count were low 0.8 and 0.7 (normal is 1.5 to 6.5) on two separate tests a month apart. She was then referred to hematologist-oncologist.
Seeing a hematologist-oncologist for the last 15 months:
He identified that she has chronic neutropenia and is on weekly injections of Neupogen for the last 15 months. Her ANC at the end of each week before her weekly injection drops to between 0.3 and 1.3 - normally at 0.9. She was also treated successfully by a GI physician for H. pylori and C. diff in 2016.
The neurologist and hematologist-oncologist have tested for many possible – probably most – autoimmune disorders.
Other blood tests all fall into the normal ranges including her beta 2 microglobulin of of 1.91 (normal 0.61 to 2.45) - except for these below as of early September (these are tested every other month)
Steadily rising paraprotein to 1.7 g/dL
Steadily rising IgG to 2,436 (normal 650 to 1,600)
Steadily rising kappa light chains of 68.8 (normal 3.3 to 19.4).
Kappa-lambda free light chain ratio 7.97 (normal 0.26 to 1.65) in September
A/G ratio 0.6 (normal 1.1 to 2.5) in September
Gamma globulin 2.2 (normal 0.7 to 1.5) in September
IgM is 45 (normal is 50.0 to 300.0) in September
I was convinced that she was going to be diagnosed with smoldering myeloma with her second bone marrow biopsy in September, but the results of her second bone marrow biopsy were just like the first one - plasma cells of 5% and no abnormalities in the plasma cell structure. FISH testing revealed no chromosome abnormalities. Skeletal x-ray was normal.
Paraprotein declined for the first time to 1.5 g/dL and IgG declined to 2,118 for the first time - both in early November.
We (her physicians and us) just keep our focus on changes in her bi-monthly myeloma testing of her blood and autoimmune disorders. I really like that her hematologist-oncologist tests her CBC with manual differential and chemistries weekly. Her physicians are extremely knowledgeable and thorough and answer all our questions. We feel very good with them.
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LuvHiking - Name: LuvHiking
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Waiting for diagnosis
- Age at diagnosis: 50
Re: MGUS with neutropenia & autoimmune disorders?
Hi Hiker,
Welcome to the Beacon.
My journey to myeloma is very similar to your wife’s. My woes started out with a bout of severe hyperthyroidism that was diagnosed as Graves’ disease (an autoimmune affliction). At the same time, I also developed serious balance issues (plus vertigo, impaired hearing, tinnitus, and a generally unstable eye gaze). I was told at the time that I had Meniere’s syndrome, although I believe it was actually an autoimmune issue. I can say that I remain “unbalanced” to this day and have had to give up my backcountry skiing and hiking. I wobble when I walk, worse when I ski. My teetering is why I chose Wobbles as my posting name.
My neutropenia also began at the same time. Over the years, my neutrophil level has drifted in the range between 0.3 and 1.2 per nanoliter. The normal range for a man of my age is (2, 7.5) per nanoliter.
Although I did not know it at the time that I first became neutropenic, I was also losing red blood cells. Eventually, this was noticed on my monthly blood tests when my hemoglobin sank below 130 g/L. I was then declared to be anemic. Red blood cell transfusions came every three weeks once my hemoglobin went below 80 g/L.
My first bone marrow biopsy showed that I had abnormal B cell and T cell lymphocytes, but it was difficult to actually pin down the exact problem. I was diagnosed with an indolent lymphoproliferative disorder. MGUS was also evident.
Ten years later my MGUS switched to active myeloma. I have only recently started therapy.
I had planned to spend a goodly amount of my retirement years exploring the mountains of British Columbia, but this is no longer possible due to my balance issues and now due to my myeloma. I just don’t have the energy to climb hills anymore. But I hope you and your wife can continue on your hiking trails.
Good luck to both of you,
Wobbles
Welcome to the Beacon.
My journey to myeloma is very similar to your wife’s. My woes started out with a bout of severe hyperthyroidism that was diagnosed as Graves’ disease (an autoimmune affliction). At the same time, I also developed serious balance issues (plus vertigo, impaired hearing, tinnitus, and a generally unstable eye gaze). I was told at the time that I had Meniere’s syndrome, although I believe it was actually an autoimmune issue. I can say that I remain “unbalanced” to this day and have had to give up my backcountry skiing and hiking. I wobble when I walk, worse when I ski. My teetering is why I chose Wobbles as my posting name.
My neutropenia also began at the same time. Over the years, my neutrophil level has drifted in the range between 0.3 and 1.2 per nanoliter. The normal range for a man of my age is (2, 7.5) per nanoliter.
Although I did not know it at the time that I first became neutropenic, I was also losing red blood cells. Eventually, this was noticed on my monthly blood tests when my hemoglobin sank below 130 g/L. I was then declared to be anemic. Red blood cell transfusions came every three weeks once my hemoglobin went below 80 g/L.
My first bone marrow biopsy showed that I had abnormal B cell and T cell lymphocytes, but it was difficult to actually pin down the exact problem. I was diagnosed with an indolent lymphoproliferative disorder. MGUS was also evident.
Ten years later my MGUS switched to active myeloma. I have only recently started therapy.
I had planned to spend a goodly amount of my retirement years exploring the mountains of British Columbia, but this is no longer possible due to my balance issues and now due to my myeloma. I just don’t have the energy to climb hills anymore. But I hope you and your wife can continue on your hiking trails.
Good luck to both of you,
Wobbles
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: MGUS with neutropenia & autoimmune disorders?
Hi LuvHiking and Joe,
Given I also have an autoimmune disease (Type 1 diabetes) and mild neutropenia and was recently diagnosed with MGUS, I went looking for any research looking at the three together. I found this very new and interesting article. I hope others also find it of interest, albeit without answers.
Reference:
Shimanovsky, A, et al, "Autoimmune manifestations in patients with multiple myeloma and monoclonal gammopathy of undetermined significance," BBA Clinical, December 2016 (full text of article)
Abstract:
Background - Multiple myeloma and its precursor, monoclonal gammopathy of undetermined significance (MGUS), have been linked with several autoimmune conditions in the medical literature. Yet, significance of these associations is not well understood.
Methods - Herein, we provide a comprehensive literature review on autoimmune disorders identified in patients with multiple myeloma and MGUS. Most relevant papers were identified via searching the PubMed/Medline and EMBASE databases for articles published from inception until May 1, 2016.
Findings - Scientific literature on autoimmune conditions in patients with multiple myeloma and MGUS consists of several case series and a multitude of case reports. Our analysis suggests an increased prevalence of autoimmune conditions in patients with multiple myeloma and monoclonal gammopathy of undetermined significance (MGUS), including various autoimmune hematologic and rheumatologic conditions among other entities. Conversely, persons with various autoimmune conditions tend to have a higher prevalence of MGUS and multiple myeloma than the general population.
Conclusions - Future research is required to explore further the link between MGUS / multiple myeloma and autoimmune disorders. Inflammation in the setting of autoimmunity may serve as a trigger for MGUS and multiple myeloma. In addition, a common genetic susceptibility for developing both an autoimmune disease and multiple myeloma / MGUS might also exist. Autoimmune hematologic and rheumatologic diseases may pose important clinical problems for the multiple myeloma patients. Therefore, a catalogue of these problems is important so that physicians are able to consider, identify and address them promptly.
Given I also have an autoimmune disease (Type 1 diabetes) and mild neutropenia and was recently diagnosed with MGUS, I went looking for any research looking at the three together. I found this very new and interesting article. I hope others also find it of interest, albeit without answers.
Reference:
Shimanovsky, A, et al, "Autoimmune manifestations in patients with multiple myeloma and monoclonal gammopathy of undetermined significance," BBA Clinical, December 2016 (full text of article)
Abstract:
Background - Multiple myeloma and its precursor, monoclonal gammopathy of undetermined significance (MGUS), have been linked with several autoimmune conditions in the medical literature. Yet, significance of these associations is not well understood.
Methods - Herein, we provide a comprehensive literature review on autoimmune disorders identified in patients with multiple myeloma and MGUS. Most relevant papers were identified via searching the PubMed/Medline and EMBASE databases for articles published from inception until May 1, 2016.
Findings - Scientific literature on autoimmune conditions in patients with multiple myeloma and MGUS consists of several case series and a multitude of case reports. Our analysis suggests an increased prevalence of autoimmune conditions in patients with multiple myeloma and monoclonal gammopathy of undetermined significance (MGUS), including various autoimmune hematologic and rheumatologic conditions among other entities. Conversely, persons with various autoimmune conditions tend to have a higher prevalence of MGUS and multiple myeloma than the general population.
Conclusions - Future research is required to explore further the link between MGUS / multiple myeloma and autoimmune disorders. Inflammation in the setting of autoimmunity may serve as a trigger for MGUS and multiple myeloma. In addition, a common genetic susceptibility for developing both an autoimmune disease and multiple myeloma / MGUS might also exist. Autoimmune hematologic and rheumatologic diseases may pose important clinical problems for the multiple myeloma patients. Therefore, a catalogue of these problems is important so that physicians are able to consider, identify and address them promptly.
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torifrog - Name: Tori
- Who do you know with myeloma?: Myself - MGUS
- When were you/they diagnosed?: Sept 1 2016
- Age at diagnosis: 51
Re: MGUS with neutropenia & autoimmune disorders?
Thank you for your replies as I feel that my wife is falling into a similiar situation with her health. I find the input on the forum very useful and meaningful.
Thank you very much!
Thank you very much!
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LuvHiking - Name: LuvHiking
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Waiting for diagnosis
- Age at diagnosis: 50
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