I am new here and arrived here by my doctor mentioning IgA myeloma. I have a few questions I'm hoping you can help me with.
All I know so far is I spent the past 6 months in and out of the hospital with pneumonia, septic, lung infections. Turns out my immune system was not working well. I had a very low IgG level. I started infusions. I only had 1 when they told me yesterday I had an IgA level of 1100 up from 600 in March. They didn't explain well, but mentioned I had "monoclonal"?
I was referred to a hematologist. I don't understand what this means. Can anyone please explain what these findings mean? Could I have multiple myeloma like my doctor suggested. Everything on the Internet keeps pointing to that. I'm so scared.
I'll also mention I'm 57 years old.
Forums
Re: Could I have multiple myeloma?
Hi Akers54,
Welcome to the forum. I'm sorry to hear about the challenges that you have been experiencing.
A significantly elevated level of monoclonal IgA could be indicative of MGUS, smoldering multiple myeloma or symptomatic multiple myeloma. While your total IgA level of 1100 mg/dL is noteworthy, it isn't that big by multiple myeloma standards and could suggest a diagnosis of MGUS. MGUS doesn't require myeloma drug treatment and many folks go through life not much the worse for it. So, I wouldn't leap to the conclusion that you have symptomatic multiple myeloma based on the results that you have shared thus far.
However, it will be important to get evaluated by hematologist that specializes in multiple myeloma. If you let us know what city you are in, folks on this forum can make some suggestions as to where to find these specialists.
Welcome to the forum. I'm sorry to hear about the challenges that you have been experiencing.
A significantly elevated level of monoclonal IgA could be indicative of MGUS, smoldering multiple myeloma or symptomatic multiple myeloma. While your total IgA level of 1100 mg/dL is noteworthy, it isn't that big by multiple myeloma standards and could suggest a diagnosis of MGUS. MGUS doesn't require myeloma drug treatment and many folks go through life not much the worse for it. So, I wouldn't leap to the conclusion that you have symptomatic multiple myeloma based on the results that you have shared thus far.
However, it will be important to get evaluated by hematologist that specializes in multiple myeloma. If you let us know what city you are in, folks on this forum can make some suggestions as to where to find these specialists.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could I have multiple myeloma?
Thanks so much for the reply.
I am in Ohio and have been referred to a hematologist at the Cleveland Clinic.
Does the low IgG level mean anything? Does it going up from 600 to 1100 in a few months mean anything?
All my problems seem to have started after a blood clot in my lung. Then I spent a lot of time in the hospital for tons of infections. I was healthy before this.
The nurse explained something about 'they should be all mixed', but but mine were 'all the same'. I don't understand what that means. The only thing she said was they were "monoclonal."
Could all the weird infections I've had be a symptom of something more?
I am in Ohio and have been referred to a hematologist at the Cleveland Clinic.
Does the low IgG level mean anything? Does it going up from 600 to 1100 in a few months mean anything?
All my problems seem to have started after a blood clot in my lung. Then I spent a lot of time in the hospital for tons of infections. I was healthy before this.
The nurse explained something about 'they should be all mixed', but but mine were 'all the same'. I don't understand what that means. The only thing she said was they were "monoclonal."
Could all the weird infections I've had be a symptom of something more?
Re: Could I have multiple myeloma?
Since your total IgA level is elevated and monoclonal protein has been detected in your blood, your IgA is likely your "involved" immunoglobulin. In other words, you have some monoclonal IgA plus "normal, healthy " IgA floating around in your blood. Since we don't know how much of your total IgA is monoclonal and how much of it is healthy, we can't definitively say that a somewhat quick rise in your total IgA level is worrisome or not from a monoclonal protein disorder standpoint.
It is also not unusual for a person with a monoclonal protein disorder to have one or more of their uninvolved immunoglobulins be suppressed. This condition is known as immunoparesis. Having immunoparesis can in turn make one prone to infections and might explain your infections, especially if your healthy IgA level might also be on the low side (immunoglobulins are key components in your blood that help fight off infections). In this case, it sounds like your IgG is the uninvolved immunoglobulin which is primarily being suppressed.
Getting intravenous immunoglobulin (IVIG) treatments will probably help you to avoid infections going forward.
In any case, you will need quite a few more tests to correctly sort out your situation. The Cleveland Clinic has some top multiple myeloma specialists on their staff, so you will be in good hands. Let us know how things go and good luck!
It is also not unusual for a person with a monoclonal protein disorder to have one or more of their uninvolved immunoglobulins be suppressed. This condition is known as immunoparesis. Having immunoparesis can in turn make one prone to infections and might explain your infections, especially if your healthy IgA level might also be on the low side (immunoglobulins are key components in your blood that help fight off infections). In this case, it sounds like your IgG is the uninvolved immunoglobulin which is primarily being suppressed.
Getting intravenous immunoglobulin (IVIG) treatments will probably help you to avoid infections going forward.
In any case, you will need quite a few more tests to correctly sort out your situation. The Cleveland Clinic has some top multiple myeloma specialists on their staff, so you will be in good hands. Let us know how things go and good luck!
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could I have multiple myeloma?
Thanks so much for replying. I was so confused after these results. My infectious disease doctor ordered a bone marrow test, so hopefully that will give some answers. I wish I had my blood test results to post, but she told them to me on the phone. She also asked me to come in Tuesday morning before the office opens to talk. So I'll know more then.
Again thanks for easing my mind! I'll be praying for everyone on here!
Again thanks for easing my mind! I'll be praying for everyone on here!
Re: Could I have multiple myeloma?
Hello Akers54!
Did they perform protein electrophoresis and immunofixation on your serum (blood) only? Or did they perform 24-hour urine tests too?
My husband's doctors are saying urine tests for monoclonal proteins are very important actually.
Wish you all the best,
Regards
Did they perform protein electrophoresis and immunofixation on your serum (blood) only? Or did they perform 24-hour urine tests too?
My husband's doctors are saying urine tests for monoclonal proteins are very important actually.
Wish you all the best,
Regards
-
sadiamitil - Name: Sadia R
- Who do you know with myeloma?: Husband, Osteosclerotic myeloma( POEMS)
- When were you/they diagnosed?: Augus, 2016
- Age at diagnosis: 38
Re: Could I have multiple myeloma?
I'm not sure what they have done. I've had so many tests. But I know she referred to it as protein in my blood. But they also said something about urine. Should I be worried?
Re: Could I have multiple myeloma?
I suggest you don't speculate too much about all this until you have your appointment and your doctor lets you know what's going on. But do ask for copies of all your lab results since they will be helpful to have during the diagnostic process.
Given you have an elevated IgA level and some monoclonal protein in your blood, those factors will also likely and naturally be reflected in various urine tests. As an example, you may have excess protein in a spot urine sample. Or, if you collected your urine over 24 hours, that test may have revealed "Bence Jones proteins" (aka a urine M-spike).
So don't fret about there being something abnormal showing up on a urine test. It's only to be expected under the circumstances and doesn't signal any sort of a worse prognosis.
Given you have an elevated IgA level and some monoclonal protein in your blood, those factors will also likely and naturally be reflected in various urine tests. As an example, you may have excess protein in a spot urine sample. Or, if you collected your urine over 24 hours, that test may have revealed "Bence Jones proteins" (aka a urine M-spike).
So don't fret about there being something abnormal showing up on a urine test. It's only to be expected under the circumstances and doesn't signal any sort of a worse prognosis.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could I have multiple myeloma?
I found a few results on a paper. It says workup revealed low IgG levels at 397. IgA levels elevated at 1100. IgE 61 and IgM 27. It says significant deficiency of total igg (<400) and deficiencies of subclass 1& 3.
Does that mean much?
Does that mean much?
Re: Could I have multiple myeloma?
This information simply helps confirm what you said before: a modestly increased total IgA level with a monoclonal component that is accompanied by immunoparesis (suppressed IgG and IgM levels).
At this point, you really need a specialist to evaluate your total picture. The specialist will likely order a handful of additional blood tests, perhaps a 24 hour urine protein electrophoresis (UPEP) test and may schedule a bone marrow biopsy to help confirm an exact diagnosis. Depending on what kind of imaging you've had before, the specialist may also order a PET/CT, whole body MRI, or full-body skeletal xray survey.
At this point, you really need a specialist to evaluate your total picture. The specialist will likely order a handful of additional blood tests, perhaps a 24 hour urine protein electrophoresis (UPEP) test and may schedule a bone marrow biopsy to help confirm an exact diagnosis. Depending on what kind of imaging you've had before, the specialist may also order a PET/CT, whole body MRI, or full-body skeletal xray survey.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
38 posts
• Page 1 of 4 • 1, 2, 3, 4
Return to Do I Have Multiple Myeloma?