Hello,
I have been treated for the last 2 1/2 years with cyclophosphamide, Revlimid (lenalidomide), Velcade, and steroids with no remission. I have recently spoken to a haematologist who has said that my multiple myeloma is a recently discovered and specific type related to my autoimmune system. Apparently it does not affect bones (true) but has high plasma cells. My last bone marrow biopsy was 80% plasma cells despite continued treatment.
Has any one else heard of this subset of multiple myeloma ("autoimmune multiple myeloma")?
I have had autoimmune problems since my teens with Hashimoto's and mixed connective tissue disease. I have IgG kappa proteins at 40 and light chains at 1300. I am slightly anaemic (98) and as said my bone marrow biopsy in July was 80% and I have no kidney disease.
Despite Internet searches I can't find any references to this. I hope someone can shed some light on this.
Many thanks,
Jane
Forums
Re: Autoimmune multiple myeloma?
Hi Jellitot,
Like you, I could not find any references to “autoimmune multiple myeloma”, but I did find references to an apparent association between autoimmune disorders and multiple myeloma. Here’s one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4900299/
I know that while bone damage occurs in most multiple myeloma patients with high levels of myeloma cells, there are people for which this is not the case.
To the extent that you have not suffered the ravages of bone damage, I think you are lucky. And I want to wish you the best of luck in bringing your myeloma cell count down.
Like you, I could not find any references to “autoimmune multiple myeloma”, but I did find references to an apparent association between autoimmune disorders and multiple myeloma. Here’s one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4900299/
I know that while bone damage occurs in most multiple myeloma patients with high levels of myeloma cells, there are people for which this is not the case.
To the extent that you have not suffered the ravages of bone damage, I think you are lucky. And I want to wish you the best of luck in bringing your myeloma cell count down.
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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: Autoimmune multiple myeloma?
Thank you so much for responding. I have been told that at least 20% of myeloma sufferers do not experience bone damage, and that is a definite bonus. However, I am in a lot of pain from mixed connective tissue disease, and my myeloma seems particularly resistant to drugs. Ideally I would have a stem cell transplant, but I can't get anywhere near remission.
Re: Autoimmune multiple myeloma?
Hi Jellitot:
There have been some studies that suggest that people with hypothyroidism have a higher chance of getting multiple myeloma. I have had Hashimoto's disease (hypothyroid autoimmune disorder) for years, unbeknownst to me. I had been treated for hypothyroid issues, but my PCP at the time didn't take the extra step to test me for Hashimoto's. Then after my induction treatment and stem cell transplant, I have now been diagnosed with fibromyalgia, as well as neuropathy. I was in constant pain. Finally, between my oncologist, PCP, and rheumatologist, they finally have the pain under control with Cymbalta (duloxetine) and gabapentin. The gabapentin seems to be helping the most.
However, I do want to mention that when I was diagnosed with multiple myeloma, I did have extensive bone involvement (a lot of lytic lesions).
You may want to ask your doctor if he thinks gabapentin may help you.
Kathleen
There have been some studies that suggest that people with hypothyroidism have a higher chance of getting multiple myeloma. I have had Hashimoto's disease (hypothyroid autoimmune disorder) for years, unbeknownst to me. I had been treated for hypothyroid issues, but my PCP at the time didn't take the extra step to test me for Hashimoto's. Then after my induction treatment and stem cell transplant, I have now been diagnosed with fibromyalgia, as well as neuropathy. I was in constant pain. Finally, between my oncologist, PCP, and rheumatologist, they finally have the pain under control with Cymbalta (duloxetine) and gabapentin. The gabapentin seems to be helping the most.
However, I do want to mention that when I was diagnosed with multiple myeloma, I did have extensive bone involvement (a lot of lytic lesions).
You may want to ask your doctor if he thinks gabapentin may help you.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Autoimmune multiple myeloma?
Hi Kathleen,
I remember the Beacon doing several polls about thyroid problems. My understanding is that this is something different; this is a particular type of myeloma with autoimmune problems and very high plasma cells. The fortunate aspect seems to be the lack of bone damage. I tried gabapentin and found it was not very effective. I have since found some relief with pregabalin (Lyrica) and a good palliative care doctor who has really sorted my pain meds.
Take care Kathleen,
Jane
I remember the Beacon doing several polls about thyroid problems. My understanding is that this is something different; this is a particular type of myeloma with autoimmune problems and very high plasma cells. The fortunate aspect seems to be the lack of bone damage. I tried gabapentin and found it was not very effective. I have since found some relief with pregabalin (Lyrica) and a good palliative care doctor who has really sorted my pain meds.
Take care Kathleen,
Jane
Re: Autoimmune multiple myeloma?
Hi Jane:
I wasn't aware of the correlation with a specific type of myeloma and autoimmune disease. I was riddled with lytic lesions, bone damage was probably one of the worst criteria I had at time of diagnosis. I had lots of pain, just didn't realize it was bone pain. So glad they are finding something for you that helps. I think for most of us it's just trial and error in controlling our symptoms.
Best of luck to you.
Kathleen
I wasn't aware of the correlation with a specific type of myeloma and autoimmune disease. I was riddled with lytic lesions, bone damage was probably one of the worst criteria I had at time of diagnosis. I had lots of pain, just didn't realize it was bone pain. So glad they are finding something for you that helps. I think for most of us it's just trial and error in controlling our symptoms.
Best of luck to you.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Autoimmune multiple myeloma?
Hi Kathleen,
This caught my eye. Is there much of a difference for the treatment of hypothyroidism versus Hashimoto's thyroiditis?
I found out I have Hashimoto's when I was in remission after my transplant, when we were doing fertility treatments to have my son. As far as I am aware, the test for Hashimoto's was a simple blood test that shows antibodies. The way my specialist explained was that even when I take the thyroid pills, the antibodies will always be high in my bloodwork, which is the sign of Hashimoto's vs. hypothyroidism for other causes. I also had a thyroid ultrasound that showed characteristic scarring and the report said "typical of Hashimoto's".
We have discussed this topic before on the Beacon, and there were a surprising number of us with Hashimoto's and hypothyroid disease. Sorry I don't have any research to share. My myeloma doc did not feel there was link, as thyroid disease runs in my family, but no one else has multiple myeloma.
This caught my eye. Is there much of a difference for the treatment of hypothyroidism versus Hashimoto's thyroiditis?
I found out I have Hashimoto's when I was in remission after my transplant, when we were doing fertility treatments to have my son. As far as I am aware, the test for Hashimoto's was a simple blood test that shows antibodies. The way my specialist explained was that even when I take the thyroid pills, the antibodies will always be high in my bloodwork, which is the sign of Hashimoto's vs. hypothyroidism for other causes. I also had a thyroid ultrasound that showed characteristic scarring and the report said "typical of Hashimoto's".
We have discussed this topic before on the Beacon, and there were a surprising number of us with Hashimoto's and hypothyroid disease. Sorry I don't have any research to share. My myeloma doc did not feel there was link, as thyroid disease runs in my family, but no one else has multiple myeloma.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Autoimmune multiple myeloma?
Hi Alyssa,
Thyroid disease runs in my family too, and as your consultant has said, the difference is whether it is autoimmune or not. I have a number of autoimmune problems including mixed connective tissue disease, which is a lupus, rheumatoid arthritis etc. My thyroid had been bothering me since my teenage years and in the last few years started to get bigger and bigger. Eventually it was removed and I and they found a small tumor inside.
Do you have any bone damage? You are so young to have this rubbish disease!
Take care, Jane
Thyroid disease runs in my family too, and as your consultant has said, the difference is whether it is autoimmune or not. I have a number of autoimmune problems including mixed connective tissue disease, which is a lupus, rheumatoid arthritis etc. My thyroid had been bothering me since my teenage years and in the last few years started to get bigger and bigger. Eventually it was removed and I and they found a small tumor inside.
Do you have any bone damage? You are so young to have this rubbish disease!
Take care, Jane
Re: Autoimmune multiple myeloma?
Hi Jane,
Unfortunately, I do have some bone effects. Diffuse osteopenia, skull (tiny holes), and some lytic lesions in the spine, which healed up, but now I have different spinal lesions.
My mom had Grave's disease, and there are a number of other autoimmune diseases. I have had some autoimmune tests come up high, but no specific diagnosis.
Treating multiple health issues may be more difficult. Other then my myeloma and taking one pill a day for the thyroid, I am in decent shape. I'm 39, turning 40 next month. Did not think I would make it to 40 but here I am almost 10 years with this disease.
Unfortunately, I do have some bone effects. Diffuse osteopenia, skull (tiny holes), and some lytic lesions in the spine, which healed up, but now I have different spinal lesions.
My mom had Grave's disease, and there are a number of other autoimmune diseases. I have had some autoimmune tests come up high, but no specific diagnosis.
Treating multiple health issues may be more difficult. Other then my myeloma and taking one pill a day for the thyroid, I am in decent shape. I'm 39, turning 40 next month. Did not think I would make it to 40 but here I am almost 10 years with this disease.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Autoimmune multiple myeloma?
Hi Alyssa:
Jane is correct there is no different treatment for Hashimoto's from hypothyroidism, the only difference is that one is autoimmune. It's funny that my Hashimoto's was not diagnosed correctly until after my stem cell transplant as well. I guess some doctors feel that since the treatment is the same there is no reason to test for an autoimmune problem - until of course you end up with something like multiple myeloma. I also want to mention I no longer use the PCP that didn't run further tests to make a more accurate diagnosis.
I did not have, that I knew of, anyone in my family either with autoimmune issues, until my Hashimoto's diagnosis and my daughter's diagnosis of lupus last November. With a little bit of research I found out that my great aunt was crippled with rheumatoid arthritis, when I was always told it was polio that had crippled her. Family secrets, when it comes to health issues, can be more than just annoying.
I agree with Jane, you are awfully young to have to be dealing with this disease, and I am terribly sorry that this has touched you and your family. I cannot imagine anything more horrifying to hear at your age. However, it sounds like you are dong great, so that's so awesome to hear.
Keep up the good fight!
Kathleen
Jane is correct there is no different treatment for Hashimoto's from hypothyroidism, the only difference is that one is autoimmune. It's funny that my Hashimoto's was not diagnosed correctly until after my stem cell transplant as well. I guess some doctors feel that since the treatment is the same there is no reason to test for an autoimmune problem - until of course you end up with something like multiple myeloma. I also want to mention I no longer use the PCP that didn't run further tests to make a more accurate diagnosis.
I did not have, that I knew of, anyone in my family either with autoimmune issues, until my Hashimoto's diagnosis and my daughter's diagnosis of lupus last November. With a little bit of research I found out that my great aunt was crippled with rheumatoid arthritis, when I was always told it was polio that had crippled her. Family secrets, when it comes to health issues, can be more than just annoying.
I agree with Jane, you are awfully young to have to be dealing with this disease, and I am terribly sorry that this has touched you and your family. I cannot imagine anything more horrifying to hear at your age. However, it sounds like you are dong great, so that's so awesome to hear.
Keep up the good fight!
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
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