Hello,
My dad, who does not like to share a lot of personal information with me, has MGUS. He has neuropathy too. He recently completed a four-week regimen of Rituxan [rituximab, MabThera]. Does this mean he has lymphoma or something similar? Do patients with MGUS but not lymphoma or myeloma receive Rituxan?
Thanks.
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Re: Father has MGUS, is being treated with Rituxan
Anon,
MGUS is a very early stage form of multiple myeloma that a lot of people (especially elderly folks) have. You do not treat MGUS, nor is there any reason to. Most people who have MGUS also have no idea they have it. Also note there is a very low statistical chance of MGUS evolving to a symptomatic form of multiple myeloma that would require treatment. While Rituxan is sometimes used in the treatment of multiple myeloma and some closely related diseases, its use by multiple myeloma patients is not that common.
If your dad is taking Rituxan, he is almost certainly taking it for some condition other than MGUS. As you suggested, it could be lymphoma. Or it could be leukemia or one of several other conditions. The Wikipedia article on Rituxan has more information about its common uses:
http://en.wikipedia.org/wiki/Rituximab
Obviously, rather than speculate about all this, it would be best if you could get your dad to confide in you. Or, as hard as it seems, you might just have to respect his wishes to keep this information to himself.
MGUS is a very early stage form of multiple myeloma that a lot of people (especially elderly folks) have. You do not treat MGUS, nor is there any reason to. Most people who have MGUS also have no idea they have it. Also note there is a very low statistical chance of MGUS evolving to a symptomatic form of multiple myeloma that would require treatment. While Rituxan is sometimes used in the treatment of multiple myeloma and some closely related diseases, its use by multiple myeloma patients is not that common.
If your dad is taking Rituxan, he is almost certainly taking it for some condition other than MGUS. As you suggested, it could be lymphoma. Or it could be leukemia or one of several other conditions. The Wikipedia article on Rituxan has more information about its common uses:
http://en.wikipedia.org/wiki/Rituximab
Obviously, rather than speculate about all this, it would be best if you could get your dad to confide in you. Or, as hard as it seems, you might just have to respect his wishes to keep this information to himself.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Father has MGUS, is being treated with Rituxan
Multibilly,
Thank you so much for your information. This is what I suspected. Good luck with your own health.
Sincerely,
Anon
Thank you so much for your information. This is what I suspected. Good luck with your own health.
Sincerely,
Anon
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Anon
Re: Father has MGUS, is being treated with Rituxan
A point of clarification. There is a form of MGUS that is associated with neuropathy and is treated with Rituxan - so there may be no need to implicate another illness.
Specifically, IgM MGUS can be associated with a peripheral neuropathy (often with a detectable anti-MAG, or myelin associated glycoprotein, antibody), and this entity can certainly respond well to a course of Rituxan.
Obviously, with limited details, one cannot be sure what he is dealing with, but this sounds like it fits.
Specifically, IgM MGUS can be associated with a peripheral neuropathy (often with a detectable anti-MAG, or myelin associated glycoprotein, antibody), and this entity can certainly respond well to a course of Rituxan.
Obviously, with limited details, one cannot be sure what he is dealing with, but this sounds like it fits.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: Father has MGUS, is being treated with Rituxan
I stand corrected regarding my earlier statement about not treating MGUS with Rituxan. Thanks Dr. Hoffman. Another good reason why one should always confirm any thing you read by a layman on this forum with your doc 
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Father has MGUS, is being treated with Rituxan
Interesting. My initial reaction to the question when I saw it was the same as Multibilly's, i.e., that this couldn't be a case of MGUS. You learn something new everyday when it comes to this disease.
When I saw Dr. Hoffman's answer, I wondered whether what he was talking about was POEMS syndrome, but I think it's something different, and it has different names.
If the neuropathy is associated with anti-MAG antibodies, then I think the condition is broadly known as "Anti-MAG peripheral neuropathy" (makes sense).
There is a subset of these cases that have monoclonal IgM as the likely cause of the condition, and those cases go by various names. I suspect the description is not standardized. I found one description as just "Polyneuropathy associated with anti-MAG IgM antibodies" (MedLink Neuropathy, introductory content only for no charge).
Apparently, there is also a broader class of neuropathies that have a monoclonal protein as the source of the problem, and which are known as "paraproteinaemic demyelinating neuropathies". Those that involve IgM as the monoclonal protein are a subset of this broader class. See page 3 of this reference:
RDM Hadden et al., "Paraproteinaemic demyelinating neuropathies," Chapter 22 of European Handbook of Neurological Management: Volume 1 (2nd Edition), Edited by NE Gilhus et al, 2011, Blackwell.
For those of you with MGUS, it may be worth spending some time going through the above document. There's a table (22.3) where the authors differentiate between two different kinds of MGUS, IgM MGUS and IgG or IgA MGUS. Here is how they define them
IgM - MGUS is defined by the presence of both of the following:
When I saw Dr. Hoffman's answer, I wondered whether what he was talking about was POEMS syndrome, but I think it's something different, and it has different names.
If the neuropathy is associated with anti-MAG antibodies, then I think the condition is broadly known as "Anti-MAG peripheral neuropathy" (makes sense).
There is a subset of these cases that have monoclonal IgM as the likely cause of the condition, and those cases go by various names. I suspect the description is not standardized. I found one description as just "Polyneuropathy associated with anti-MAG IgM antibodies" (MedLink Neuropathy, introductory content only for no charge).
Apparently, there is also a broader class of neuropathies that have a monoclonal protein as the source of the problem, and which are known as "paraproteinaemic demyelinating neuropathies". Those that involve IgM as the monoclonal protein are a subset of this broader class. See page 3 of this reference:
RDM Hadden et al., "Paraproteinaemic demyelinating neuropathies," Chapter 22 of European Handbook of Neurological Management: Volume 1 (2nd Edition), Edited by NE Gilhus et al, 2011, Blackwell.
For those of you with MGUS, it may be worth spending some time going through the above document. There's a table (22.3) where the authors differentiate between two different kinds of MGUS, IgM MGUS and IgG or IgA MGUS. Here is how they define them
IgM - MGUS is defined by the presence of both of the following:
- No lymphoplasmacytic infiltration on bone marrow biopsy, or equivocal infiltration with negative phenotypic studies
- No signs or symptoms suggesting tumour infiltration (e.g. constitutional symptoms, hyperviscosity syndrome, organomegaly)
- Serum monoclonal component ≤ 30 g/L
- Bence - Jones proteinuria ≤ 1 g/24h
- No lytic or sclerotic lesions in bone
- No anaemia, hypercalcaemia, or chronic renal insufficiency
- Bone marrow plasma cell infiltration < 10%
Re: Father has MGUS, is being treated with Rituxan
Thank you Dr. Hoffman, thank you others. I appreciate the information.
Anon
Anon
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Anon
Re: Father has MGUS, is being treated with Rituxan
My husband was diagnosed with MGUS in 2011. He had significant peripheral neuropathy, starting at his feet up to just below knees, and his fingers were starting to be involved. He got 4 doses of Rituxan (rituximab) in 2011. He got feeling back in fingers and legs and only residual was no feeling in toes both feet.
He follows up with his neurologist every 6 months. Just recently he noted the loss of feeling progressing to mid foot both sides. We think he may need a second treatment.
It has been 5 years. We are moving to Florida. Does anyone know who gives this treatment in the Gainesville or Jacksonville areas? We could also travel to Miami if necessary.
Thank you.
He follows up with his neurologist every 6 months. Just recently he noted the loss of feeling progressing to mid foot both sides. We think he may need a second treatment.
It has been 5 years. We are moving to Florida. Does anyone know who gives this treatment in the Gainesville or Jacksonville areas? We could also travel to Miami if necessary.
Thank you.
Re: Father has MGUS, is being treated with Rituxan
Hi edelstep,
The Mayo Clinic's Jacksonville location may make the most sense for your husband. They have several physicians who specialize in plasma cell disorders, and they could give your husband a thorough check up to ensure that Rituxan is the best approach to managing his neuropathy.
Good luck!
The Mayo Clinic's Jacksonville location may make the most sense for your husband. They have several physicians who specialize in plasma cell disorders, and they could give your husband a thorough check up to ensure that Rituxan is the best approach to managing his neuropathy.
Good luck!
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Jonah
9 posts
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