My father was recently diagnosed with high-risk smoldering multiple myeloma. He does have immunoparesis.
IgG 1999 mg/dl (700 - 1600)
IgM <25 mg/dl (40 - 230)
IgA 55 mg/dl (70 - 400)
M Spike 2.0 g/dL (or 20 g/l)
He has developed a bad cold which may have turned into bronchitis or pneumonia. He is seeing his general practitioner for this later today.
Can anything be done for the immunoparesis? I know IVIG infusions are an option for recurrent infections. Also, when he gets sick, should my father see a doctor so he can be treated sooner? Should he notify his oncologist or general practitioner when he gets sick?
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Helen521 - Who do you know with myeloma?: father (Smoldering)
- When were you/they diagnosed?: Sept 2016
- Age at diagnosis: 65
Re: Immunoparesis - what to do when you have it?
Has your father seen an oncologist recently and does he/she know of your father's infections? Is he getting infections on a regular basis? Does he have any of the CRAB criteria - elevated calcium, renal (kidney) problems, anemia (lose hemoglobin), or bone lesions? It might be a good time to ask your father's oncologist when s/he thinks that it is time to start treating your father for the myeloma. Treating the myeloma is the only way that I know to improve the immunoparesis.
Nancy in Phila
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Immunoparesis - what to do when you have it?
Thank you for the reply, Nancy.
To answer your questions, my father was seen two weeks ago by the oncologist and will be seen again on Wednesday. The oncologist right now is not aware of the infection, which turned out to be bronchitis. This is my father's first infection since last year.
In terms of CRAB criteria, he had small lucent lesions on the bone survey last month. They are doing an MRI on Wednesday to clarify exactly what kind of lesions they are. His most recent labs on September 19, 2016 showed a low estimated GFR at 49 and a slightly high creatinine at 1.43 mg/dl (norm 0.7 - 1.3 mg/dl). The oncologist thought perhaps my father was not hydrated, so he wants to recheck the labs on Wednesday to see if they were true results. The oncologist said that if either of these things were positive that my father would now be classified as having symptomatic multiple myeloma, not smoldering as he currently is, and we would move right on to treatment.
So many things were discussed at this past appointment that we didn't really get around to the immunoparesis. I even had it on my list of questions but was quite overwhelmed with all the info. The only thing the oncologist mentioned was that immunoparesis did classify him as high-risk smoldering multiple myeloma.
Again, thank you for your response.
To answer your questions, my father was seen two weeks ago by the oncologist and will be seen again on Wednesday. The oncologist right now is not aware of the infection, which turned out to be bronchitis. This is my father's first infection since last year.
In terms of CRAB criteria, he had small lucent lesions on the bone survey last month. They are doing an MRI on Wednesday to clarify exactly what kind of lesions they are. His most recent labs on September 19, 2016 showed a low estimated GFR at 49 and a slightly high creatinine at 1.43 mg/dl (norm 0.7 - 1.3 mg/dl). The oncologist thought perhaps my father was not hydrated, so he wants to recheck the labs on Wednesday to see if they were true results. The oncologist said that if either of these things were positive that my father would now be classified as having symptomatic multiple myeloma, not smoldering as he currently is, and we would move right on to treatment.
So many things were discussed at this past appointment that we didn't really get around to the immunoparesis. I even had it on my list of questions but was quite overwhelmed with all the info. The only thing the oncologist mentioned was that immunoparesis did classify him as high-risk smoldering multiple myeloma.
Again, thank you for your response.
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Helen521 - Who do you know with myeloma?: father (Smoldering)
- When were you/they diagnosed?: Sept 2016
- Age at diagnosis: 65
Re: Immunoparesis - what to do when you have it?
Dear Helen521,
IVIG infusions are extremely effective in protecting people with immunoparesis against infections. I suggest you talk to your father's medical team about having him placed on this treatment immediately. The infusions are usually given monthly. I have immunoparesis, and in the year that I have been receiving IVIG, I have had no infections at all.
Nancy's suggestion about seeing whether your father should commence myeloma treatment is excellent as well. I would modify it only to make getting him on IVIG a first priority, so that the risk of infection is addressed immediately. He absolutely should also be treated for the myeloma, too, and these two treatments can be (and are often) done at the same time.
Treating the myeloma corrects the immunoparesis in many people, but not everyone, Sometimes the immunoglobulins recover slowly during myeloma treatment, and sometimes they do not recover at all, unfortunately.
IVIG infusions are extremely effective in protecting people with immunoparesis against infections. I suggest you talk to your father's medical team about having him placed on this treatment immediately. The infusions are usually given monthly. I have immunoparesis, and in the year that I have been receiving IVIG, I have had no infections at all.
Nancy's suggestion about seeing whether your father should commence myeloma treatment is excellent as well. I would modify it only to make getting him on IVIG a first priority, so that the risk of infection is addressed immediately. He absolutely should also be treated for the myeloma, too, and these two treatments can be (and are often) done at the same time.
Treating the myeloma corrects the immunoparesis in many people, but not everyone, Sometimes the immunoglobulins recover slowly during myeloma treatment, and sometimes they do not recover at all, unfortunately.
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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 - what to do when you have it?
Your father's oncologist should be made aware of the bronchitis. My oncologist wants to know about any medical problem that I develop, even if he then recommends that my primary doctor, or some other doctor, be the one to treat it. Bronchitis is one of the infections, as well as pneumonia, that we are really susceptible to getting.
Good luck with your father's appointment this week,
Nancy in Phila
Good luck with your father's appointment this week,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Immunoparesis - what to do when you have it?
Hi.
I don't have much to add but can say that I have had immunoparesis for almost two years now, low IgM. My IgA is normal. My M-protein is IgG kappa, and the amount of my good (not monoclonal) IgG is below normal if subtracting the monoclonal protein from total IgG.
I did have two horrible tooth infections that ate into my jaw bone right when my immunoparesis appeared on labs. I had never had a tooth infection prior or any dental issues for that matter, so I thought they were likely related to the low IgM, which has been near 25 since August 2014 after slowly dropping to below normal over the course of the year prior. As my M-spike tripled in 2013-2014, my IgM lowered.
Outside of the tooth infections, I have not been ill. I've also had a couple of fillings without any additional tooth infections. With low overall good IgG and low IgM I wondered if I would begin to get sick more often, but luckily I have not had any issues. I did have a fever on and off April thru May 2015, but exhaustive infectious disease testing didn't turn up anything and the fevers ceased.
Hopefully your father is fine even with immunoparesis.
I don't have much to add but can say that I have had immunoparesis for almost two years now, low IgM. My IgA is normal. My M-protein is IgG kappa, and the amount of my good (not monoclonal) IgG is below normal if subtracting the monoclonal protein from total IgG.
I did have two horrible tooth infections that ate into my jaw bone right when my immunoparesis appeared on labs. I had never had a tooth infection prior or any dental issues for that matter, so I thought they were likely related to the low IgM, which has been near 25 since August 2014 after slowly dropping to below normal over the course of the year prior. As my M-spike tripled in 2013-2014, my IgM lowered.
Outside of the tooth infections, I have not been ill. I've also had a couple of fillings without any additional tooth infections. With low overall good IgG and low IgM I wondered if I would begin to get sick more often, but luckily I have not had any issues. I did have a fever on and off April thru May 2015, but exhaustive infectious disease testing didn't turn up anything and the fevers ceased.
Hopefully your father is fine even with immunoparesis.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
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