Hello!
I am new here.
I have had two blood tests confirm that I have monoclonal gammopathy. I will be seeing a hematologist tomorrow for a consult. It is my understanding that this will be to rule out multiple myeloma. I have lupus and am taking a medication that may be giving me a false positive reading. I have read that lupus itself can cause the test to be positive. The medication is Benlysta (belimumab), and I'm concerned it may have caused the monoclonal gammopathy. I just don't know it it's causing a false reading or if it has caused me to possibly become pre-cancerous.
Thank you for any guidance or suggestions,
Bren
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Re: Possible multiple myeloma & taking Benlysta for lupus
I really can't speak to the impact of lupus as the potential cause of this monoclonal gammopathy or its effect on your lab results. Maybe some other folks can.
However, you don't say what blood tests you already had, nor what the specific results were that indicated a monoclonal gammopathy. In general, you need the tests associated with the diagnostic criteria for multiple myeloma described here:
"Criteria for a multiple myeloma diagnosis"
Based on the results of these tests, the next step would be to get the imaging and bone marrow biopsy, as you suggest.
The bone marrow biopsy is the definitive test and will also help in determining what level of multiple myeloma you might have (you may not be symptomatic and simply have MGUS or smoldering myeloma).
A full skeletal xray or MRI will simply tell you if you have bone lesions or not. Bone lesions (the "B" in CRAB) are just one of four "CRAB" criteria that may tell you that you are symptomatic or not. But you also have to look at your calcium, renal (kidney) function and anemia (hemaglobin) levels to see if you may have one of the other letters in CRAB. Meeting any one of these criteria will classify you as symptomatic.
Again (assuming that lupus isn't factoring into this and your bone marrow biopsy confirms myeloma), you very well may not be symptomatic and may remain that way for your entire life without issue. Good luck
However, you don't say what blood tests you already had, nor what the specific results were that indicated a monoclonal gammopathy. In general, you need the tests associated with the diagnostic criteria for multiple myeloma described here:
"Criteria for a multiple myeloma diagnosis"
Based on the results of these tests, the next step would be to get the imaging and bone marrow biopsy, as you suggest.
The bone marrow biopsy is the definitive test and will also help in determining what level of multiple myeloma you might have (you may not be symptomatic and simply have MGUS or smoldering myeloma).
A full skeletal xray or MRI will simply tell you if you have bone lesions or not. Bone lesions (the "B" in CRAB) are just one of four "CRAB" criteria that may tell you that you are symptomatic or not. But you also have to look at your calcium, renal (kidney) function and anemia (hemaglobin) levels to see if you may have one of the other letters in CRAB. Meeting any one of these criteria will classify you as symptomatic.
Again (assuming that lupus isn't factoring into this and your bone marrow biopsy confirms myeloma), you very well may not be symptomatic and may remain that way for your entire life without issue. Good luck
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Possible multiple myeloma & taking Benlysta for lupus
Thank you so much for all the information. It is a bit overwhelming trying to read through & you broke it down into understandable terms.
I went to Johns Hopkins for a second opinion regarding my lupus in April 2013. They ran the full gamut of blood work & picked up on the monoclonal gammopathy. The test results that were flagged were IgG 660. IgA and IgM fell in the normal range. Notes on the lab results recommend a 24 hour or random urine for Bence Jones protein. To my knowledge this has not been tested (on a random; I'd remember if they asked for a 24 hour. lol). The doctor noted on the labs in her handwriting, "There is monoclonal gammopathy IgG is low-this can predispose to infection". She also mailed me typed notes that stated under assessments: Monoclonal gammopathy. We detect a monoclonal protein at 0.15 g/dl. This is a small abnormal protein. This should be followed up by hematology.
The Johns Hopkins visit was a one-time thing so I am back to seeing my local rheumatologist. He tested me again in August and still detects monoclonal gammopathy. He did not give me my lab report so I have no details. He set me up with a hematologist, so that is where I stand. My appointment is tomorrow. My renal function, calcium, and hemoglobin all tested normal in April as far as CRAB criteria are concerned, which lends itself more to just MGUS or smoldering at the most. Never had a bone scan other than a density test. I developed osteopenia at 34. It sounds like the only complete way to rule out smoldering or multiple myeloma is more definitive testing. I do NOT want them to continue to just check my blood every few months if that isn't going to give me the full picture. I also don't want to run unnecessary tests.
My thoughts on the lupus medicine causing this/making it a false positive are because it is listed as a monoclonal antibody medicine. The leaflet states it can also increase the risk of certain cancers (conveniently leaving out which ones they are) because it weakens the immune system. The medicine has been in trials for years, but only FDA approved since 2011 and that is when I began using it. There was another member here who posted over a year ago about the same thing (same medicine), but she only posted 3 times and doesn't seem to be here any longer.
Again, thank you for your detailed info!
I went to Johns Hopkins for a second opinion regarding my lupus in April 2013. They ran the full gamut of blood work & picked up on the monoclonal gammopathy. The test results that were flagged were IgG 660. IgA and IgM fell in the normal range. Notes on the lab results recommend a 24 hour or random urine for Bence Jones protein. To my knowledge this has not been tested (on a random; I'd remember if they asked for a 24 hour. lol). The doctor noted on the labs in her handwriting, "There is monoclonal gammopathy IgG is low-this can predispose to infection". She also mailed me typed notes that stated under assessments: Monoclonal gammopathy. We detect a monoclonal protein at 0.15 g/dl. This is a small abnormal protein. This should be followed up by hematology.
The Johns Hopkins visit was a one-time thing so I am back to seeing my local rheumatologist. He tested me again in August and still detects monoclonal gammopathy. He did not give me my lab report so I have no details. He set me up with a hematologist, so that is where I stand. My appointment is tomorrow. My renal function, calcium, and hemoglobin all tested normal in April as far as CRAB criteria are concerned, which lends itself more to just MGUS or smoldering at the most. Never had a bone scan other than a density test. I developed osteopenia at 34. It sounds like the only complete way to rule out smoldering or multiple myeloma is more definitive testing. I do NOT want them to continue to just check my blood every few months if that isn't going to give me the full picture. I also don't want to run unnecessary tests.
My thoughts on the lupus medicine causing this/making it a false positive are because it is listed as a monoclonal antibody medicine. The leaflet states it can also increase the risk of certain cancers (conveniently leaving out which ones they are) because it weakens the immune system. The medicine has been in trials for years, but only FDA approved since 2011 and that is when I began using it. There was another member here who posted over a year ago about the same thing (same medicine), but she only posted 3 times and doesn't seem to be here any longer.
Again, thank you for your detailed info!
Re: Possible multiple myeloma & taking Benlysta for lupus
So, your M-spike is indeed low, which is great.
I'm not sure what to make of your borderline low IgG, assuming this is in mg/dL? The normal range for IgG at my lab is 700-1400 mg/dL (are your IgG results in mg/dL or is it in some other unit of measure or does your lab use some other range of normal values?). I would have thought that since you had a small M-spike (amount of monoclonal immunoglobulins) that one of your immunoglobulin labs would have been slightly elevated? (Note that your immunoglobulin labs measure the sum of the total healthy and monoclonal immunoglobulins.)
If you suspect multiple myeloma, you definitely do want to hunt down the Bence Jones proteins (light chains) and I would recommend getting the various key tests associated with the criteria (including imaging and bone marrow biopsy) so that you have a baseline going forward. It sounds like you already had an SPEP, metabolic panel, CBC and your various immunoglobulin levels tested.
My doctor isn't all that big on 24-hour urine tests as he already has a pretty good idea of what is going on from my routine serum free light chain assay, SPEP, immunoglobulin level, etc. That's fine by me as the 24-hour urine tests are a drag. You could very well end up just being MGUS (again, assuming something else isn't in play here) and would only have to get some simple and quick serum tests every year or so if that is the case. It's also really no more hassle and time to have a few serum tests done as opposed to just one or two.
I'm not sure what to make of your borderline low IgG, assuming this is in mg/dL? The normal range for IgG at my lab is 700-1400 mg/dL (are your IgG results in mg/dL or is it in some other unit of measure or does your lab use some other range of normal values?). I would have thought that since you had a small M-spike (amount of monoclonal immunoglobulins) that one of your immunoglobulin labs would have been slightly elevated? (Note that your immunoglobulin labs measure the sum of the total healthy and monoclonal immunoglobulins.)
If you suspect multiple myeloma, you definitely do want to hunt down the Bence Jones proteins (light chains) and I would recommend getting the various key tests associated with the criteria (including imaging and bone marrow biopsy) so that you have a baseline going forward. It sounds like you already had an SPEP, metabolic panel, CBC and your various immunoglobulin levels tested.
My doctor isn't all that big on 24-hour urine tests as he already has a pretty good idea of what is going on from my routine serum free light chain assay, SPEP, immunoglobulin level, etc. That's fine by me as the 24-hour urine tests are a drag. You could very well end up just being MGUS (again, assuming something else isn't in play here) and would only have to get some simple and quick serum tests every year or so if that is the case. It's also really no more hassle and time to have a few serum tests done as opposed to just one or two.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Possible multiple myeloma & taking Benlysta for lupus
I didn't notice the odd level until you pointed it out. It is listed 0.15 g, not mg in the doctor's notes, but that still does not translate to 660 mg, which is in the lab report. I tend to think the lab report is right and the other must be a typo. IgA was 94 and IgM was 62 so on the lower end, but normal values. Just saw it was noted that there is a lambda band clearly evident..
Thanks again for your input. You are so well versed. I am so sorry you have had to become so well versed in these lab values.
I'm making notes from what I have learned here & copies of my labs to take in tomorrow. I will update when I get home.
Take Care,
Brenda
Thanks again for your input. You are so well versed. I am so sorry you have had to become so well versed in these lab values.
I'm making notes from what I have learned here & copies of my labs to take in tomorrow. I will update when I get home.
Take Care,
Brenda
Re: Possible multiple myeloma & taking Benlysta for lupus
My hematology consult went well. They are running blood tests; preliminary tests are normal. I will do a 24-hour urine collection to be tested. They want to check everything again in 3 months. At this point the only abnormal test is my IgG. Without any other tests being "off," they believe it is related to my autoimmune disease, lupus. They say they see this a lot in lupus patients. It could be the medications I am taking, but they are not familiar enough with the drug to say it definitely is the cause.
I did get a message later while I was out that my ferrous level was back and only 32 (they want it to be between 100-200), so I will start iron supplementation, possible a transfusion of iron. I don't feel a need to press for a bone marrow biopsy or bone scan at this time since I do have other medical conditions that could be the root of the problem. If I were coming into this "healthy" or had other blood tests that were low / high, I would be more apt to keep looking.
Multibilly, thanks again for your input!
Brenda
I did get a message later while I was out that my ferrous level was back and only 32 (they want it to be between 100-200), so I will start iron supplementation, possible a transfusion of iron. I don't feel a need to press for a bone marrow biopsy or bone scan at this time since I do have other medical conditions that could be the root of the problem. If I were coming into this "healthy" or had other blood tests that were low / high, I would be more apt to keep looking.
Multibilly, thanks again for your input!
Brenda
Re: Possible multiple myeloma & taking Benlysta for lupus
I too have lupus and was on Benlysta from July to August 2017 with horrible side effects from it, so I had to stop treatment. In November 2017 I was diagnosed with stage one kidney disease with microalbuminuria but normal renal function and a GFR of 92. Less than 4 weeks later, my GFR is only 60 and on border of stage 3 and I was diagnosed January 8, 2018 with monoclonal gammopathy. M-spike of 0.7 IgG. I have have 3 episodes of random iron deficiency anemia 3 times, with hemoglobin to 8 the first time. I’ve had infusions of iron twice and am getting ready to have another one. Also, in last 2 months, refractory hypertension.
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Anonymous
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