I have had two upper respiratory infections since the first of this year. I am afraid as I had a upper respiratory infection prior to my stem cell transplant and had heart failure with an ejection fraction of 40%.
I am a nurse and have spent many years giving IVIG to patients, so I am wondering whether I should I ask for that for myself. I think two upper respiratory infections in one year, and it is just March, is too much.
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Lin516 - Name: Lin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 04/09/2013
- Age at diagnosis: 57
Re: Frequent respiratory infections - time for IVIG?
Hi Lin,
I think the big question is whether your normal immunoglobulin levels are currently low. That would likely be what your doc would look at first before considering starting IVIG treatment. What are your IgG, IgA, IgM and M-spike levels, including units of measure and normal reference ranges and M-spike isotype?
I think the big question is whether your normal immunoglobulin levels are currently low. That would likely be what your doc would look at first before considering starting IVIG treatment. What are your IgG, IgA, IgM and M-spike levels, including units of measure and normal reference ranges and M-spike isotype?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Frequent respiratory infections - time for IVIG?
My experience with IVIG is that it is very expensive and insurance will not cover it unless the treating physician can make a compelling argument for its use. In my case, I had low IgA and IgM levels primarily due to treatment. I then came down with viral meningitis and C. diff at the same time and had to be hospitalized. The combination of those things enabled my doctor to prescribe IVIG and my insurance to approve it. However, I'm not sure a couple of upper respiratory infections would be enough to pass the insurance review.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Frequent respiratory infections - time for IVIG?
Hey Ron,
I hope you are doing well.
My understanding is that IVIG treatment is made up almost exclusively of IgG immunoglobulins. I've therefore wondered how a patient with only low, polyclonal levels of IgA or IgM might benefit from IVIG treatment. Or was your polyclonal IgG level also suppressed?
I hope you are doing well.
My understanding is that IVIG treatment is made up almost exclusively of IgG immunoglobulins. I've therefore wondered how a patient with only low, polyclonal levels of IgA or IgM might benefit from IVIG treatment. Or was your polyclonal IgG level also suppressed?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Frequent respiratory infections - time for IVIG?
Multibilly,
They were all suppressed. However, not alarmingly low. Many people have had lower levels than I and are not on IVIG.
The occurrence was back in 2012. The trigger for me was the meningitis, a serious viral infection. The IVIG treatments are designed to boost the body's ability to fight off viral infections. Most upper respiratory infections are bacterial, so not sure IVIG would help with those. The C. diff that I also had was an opportunistic bacterial infection that took hold because my body was weakened from the meningitis.
During the time I was infected, I suffered from expressive aphasia (inability to speak coherently), and the ER docs thought I had suffered a stroke. After an MRI and some other tests, they diagnosed the meningitis. My oncologist took me off of Revlimid as a precaution and then started me on IVIG. Had to jump through a series of insurance reviews to get the treatment approved.
They were all suppressed. However, not alarmingly low. Many people have had lower levels than I and are not on IVIG.
The occurrence was back in 2012. The trigger for me was the meningitis, a serious viral infection. The IVIG treatments are designed to boost the body's ability to fight off viral infections. Most upper respiratory infections are bacterial, so not sure IVIG would help with those. The C. diff that I also had was an opportunistic bacterial infection that took hold because my body was weakened from the meningitis.
During the time I was infected, I suffered from expressive aphasia (inability to speak coherently), and the ER docs thought I had suffered a stroke. After an MRI and some other tests, they diagnosed the meningitis. My oncologist took me off of Revlimid as a precaution and then started me on IVIG. Had to jump through a series of insurance reviews to get the treatment approved.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Frequent respiratory infections - time for IVIG?
You could ask your doctor if Mepron (atovaquone) would help your respiratory infections that may be coming from a weaker immune system due to treatments.
/Bob
/Bob
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Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
Re: Frequent respiratory infections - time for IVIG?
Thanks to all who replied.
I just had bloodwork today. There was a change in my antibiotic and an anti-fungal was added. I will see what the labs suggest. I'm post autologous stem cell transplant and bone marrow biopsy negative for cancer. Now, I am worried about multiple upper respiratory infections scarring my lungs. Plus, I want to work. (Turn 62 in May) I work in surgery and it is nearly impossible to wear a mask when you can't breath; not to mention the havoc it plays on my OR for staffing. We are not large enough to absorb my absence. I realize the IVIG is expensive; but if it is called for, then it is called for. I want to work.
I will try and update.
Again, thanks for the replies!
I just had bloodwork today. There was a change in my antibiotic and an anti-fungal was added. I will see what the labs suggest. I'm post autologous stem cell transplant and bone marrow biopsy negative for cancer. Now, I am worried about multiple upper respiratory infections scarring my lungs. Plus, I want to work. (Turn 62 in May) I work in surgery and it is nearly impossible to wear a mask when you can't breath; not to mention the havoc it plays on my OR for staffing. We are not large enough to absorb my absence. I realize the IVIG is expensive; but if it is called for, then it is called for. I want to work.
I will try and update.
Again, thanks for the replies!
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Lin516 - Name: Lin
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 04/09/2013
- Age at diagnosis: 57
Re: Frequent respiratory infections - time for IVIG?
Hi Lin516,
I'm a nurse too and understand the complexity of OR staffing in a small hospital. I retired, then less than a year later was diagnosed. So thankfully no was was depending on me to be at work and ready to go. I had my autologous stem cell transplant (ASCT) in July of 2016 and did not have any respiratory infections until November of 2016, then it was one right after another. 3 colds in a row, then pneumonia that caused me to be hospitalized for a week. I needed IV antibiotics and several rounds of oral antibiotics before it was gone. The infiltrate was seen on x-ray for weeks, and I thought I'd never stop coughing.
Even before my hospitalization, my myeloma specialist ordered IVIG, which was denied by my insurance. At the time, my IgG level was about 480, and they used 400 as the threshold. My doctor called and talked to the doctor that denied and explained about the pneumonia and hospitalization, and I was immediately approved for 4 infusions. I have had 2 so far, a month apart, and have not had any issues. My immunoglobulins on the SPEP were in the normal range for the first time in over a year.
According to my doctor, it almost always requires a call for approval, and so they are used to it.
Good luck and be careful, Lots of unknowns lurking out there in hospitals.
I'm a nurse too and understand the complexity of OR staffing in a small hospital. I retired, then less than a year later was diagnosed. So thankfully no was was depending on me to be at work and ready to go. I had my autologous stem cell transplant (ASCT) in July of 2016 and did not have any respiratory infections until November of 2016, then it was one right after another. 3 colds in a row, then pneumonia that caused me to be hospitalized for a week. I needed IV antibiotics and several rounds of oral antibiotics before it was gone. The infiltrate was seen on x-ray for weeks, and I thought I'd never stop coughing.
Even before my hospitalization, my myeloma specialist ordered IVIG, which was denied by my insurance. At the time, my IgG level was about 480, and they used 400 as the threshold. My doctor called and talked to the doctor that denied and explained about the pneumonia and hospitalization, and I was immediately approved for 4 infusions. I have had 2 so far, a month apart, and have not had any issues. My immunoglobulins on the SPEP were in the normal range for the first time in over a year.
According to my doctor, it almost always requires a call for approval, and so they are used to it.
Good luck and be careful, Lots of unknowns lurking out there in hospitals.
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loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
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