It appears that, despite my stringent complete response as measured by monthly serum free light chain tests (I have kappa light chain multiple myeloma), all of my immunoglobulins – including IgG – remain just as low as when I had active disease.
I am on once-a-month IVIG therapy, and afterwards my IgG levels return to the normal range, but then begin to decrease. My uninvolved immunoglobulins stay at very, very low levels.
Neither my local oncologist, nor my stem cell doctor can explain this, but it makes no sense to me.
Is what's happened with me very unusual? Or does it just happen sometimes that, even this long (13 months) after a transplant, and with a very good response (stringent complete response), it's still possible to have persistent hypoimmunoglobulinemia?
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Immunoparesis - does it go away after treatment?
Hi Mr. Potatohead,
I am so happy to hear that you are in stringent complete response (sCR). I am approximately 3 l/2 years post transplant (October, 2014). Only in the last 6 months have my immunoglobulins normalized. They were never to the point where I needed IVIG. However, they remained low until recently.
Are you on maintenance? That can affect the immunoglobulins, as well.
Hang in there. I know from your posts that you have been through a lot. Glad you finally got the sCR!
I am so happy to hear that you are in stringent complete response (sCR). I am approximately 3 l/2 years post transplant (October, 2014). Only in the last 6 months have my immunoglobulins normalized. They were never to the point where I needed IVIG. However, they remained low until recently.
Are you on maintenance? That can affect the immunoglobulins, as well.
Hang in there. I know from your posts that you have been through a lot. Glad you finally got the sCR!
Re: Immunoparesis - does it go away after treatment?
Thank you, Ellen.
I was on Kyprolis maintenance until three months ago. Had to quit that because of heart effects. Now my doctor wants me on Ninlaro (ixazomib).
Maybe I should refuse that. I hate getting these 8 hour IVIG infusions every month!
It’s so great that you are doing so well after three years!
I was on Kyprolis maintenance until three months ago. Had to quit that because of heart effects. Now my doctor wants me on Ninlaro (ixazomib).
Maybe I should refuse that. I hate getting these 8 hour IVIG infusions every month!
It’s so great that you are doing so well after three years!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Immunoparesis - does it go away after treatment?
Hi Mr. Potatohead,
My husband has IgG kappa myeloma. His immunoglobulins (involved IgG and uninvolved IgA and IgM) have always been suppressed since diagnosis (April 2015), regardless of his disease status.
Laurie
My husband has IgG kappa myeloma. His immunoglobulins (involved IgG and uninvolved IgA and IgM) have always been suppressed since diagnosis (April 2015), regardless of his disease status.
Laurie
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Immunoparesis - does it go away after treatment?
Interesting, as I was originally diagnosed with light chain myeloma and my IgA and IgM have always been well below normal. I have been on monthly IVIG infusions since July 2012. Since my original diagnosis, I have also developed a slight M-Spike which has been holding at 0.2 g/dL (2 g/l) for the last 3 years. Like Mr. Potatohead, since my IVIG infusions I have avoided most infections. I did come down with Type A flu last winter, but it was mild, although I did take an antibiotic for a sinus infection that also ensued.
I wonder if light chain myeloma patients develop immunoparesis more often or severe than those with the more standard M-spike type myeloma.
I wonder if light chain myeloma patients develop immunoparesis more often or severe than those with the more standard M-spike type myeloma.
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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: Immunoparesis - does it go away after treatment?
These are my quarterly readings with IVIG infusions over the past year:
Jul 2017 Oct 2017 Dec 2017 Mar 2018
IgA 31 31 43 34
IgM 24 31 37 24
IgG 818 760 778 785
They have been fairly consistent. The IgG is in the normal range with the IgM and IgA running well below normal.
Normal Range
IgA 84-474
IgM 48-312
IgG 681-1648
Keep in mind that this is with monthly IVIG infusions. I went back to 2012 and looked at the numbers before the infusions and note that the IgA and IgM were not much different than now but the IgG was below normal bouncing between the mid 550s and 650. For nearly 3 years (through 2015) after beginning the IVIG infusions, all or the readings improved but all gradually fell back to the levels I am reporting now.
Ron
Jul 2017 Oct 2017 Dec 2017 Mar 2018
IgA 31 31 43 34
IgM 24 31 37 24
IgG 818 760 778 785
They have been fairly consistent. The IgG is in the normal range with the IgM and IgA running well below normal.
Normal Range
IgA 84-474
IgM 48-312
IgG 681-1648
Keep in mind that this is with monthly IVIG infusions. I went back to 2012 and looked at the numbers before the infusions and note that the IgA and IgM were not much different than now but the IgG was below normal bouncing between the mid 550s and 650. For nearly 3 years (through 2015) after beginning the IVIG infusions, all or the readings improved but all gradually fell back to the levels I am reporting now.
Ron
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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: Immunoparesis - does it go away after treatment?
Thank you, Iwem. My diagnosis came a month before your husband’s, although I subsequently discovered that I have had active myeloma since at least four years before. And like your husband, I have had abnormally low immunoglobulin levels despite the status of my multiple myeloma. Curious.
Ron, it seems that low immunoglobulins are quite common, even when the disease is in remission or stable. Your speculation about whether those of us with light chain variants are more prone to hypogammaglobulinemia / immunoparesis is interesting.
How much of the manifestations of this disease is a result of active myeloma, perhaps at an MRD level which lies below the current standard test thresholds, and how much is due to permanent damage left in its wake is still, apparently, very much an open question in many cases.
Ron, it seems that low immunoglobulins are quite common, even when the disease is in remission or stable. Your speculation about whether those of us with light chain variants are more prone to hypogammaglobulinemia / immunoparesis is interesting.
How much of the manifestations of this disease is a result of active myeloma, perhaps at an MRD level which lies below the current standard test thresholds, and how much is due to permanent damage left in its wake is still, apparently, very much an open question in many cases.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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