I have done interferon injections for multiple sclerosis (MS) for 20 years and was diagnosed with MGUS in 2004, smoldering multiple myeloma in 2014, and my last labs indicate that I may need to start treatment for (active) multiple myeloma.
My current hematologist is concerned about the effect of any myeloma treatment on the multiple sclerosis. I have tried doing some research on PubMed, etc without any success regarding treatment options that I might have. I would say that my course of multiple sclerosis is stable and relatively benign, if there is such a thing. I would be interested in any information anyone might have about how treatment for multiple myeloma might affect multiple sclerosis, and whether certain treatment options are better than others when it comes to the impact on the MS.
Thanks.
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Kay - Name: Kay Wilson
- Who do you know with myeloma?: SMM
- When were you/they diagnosed?: 2014
- Age at diagnosis: 72
Re: Impact of myeloma treatment on multiple sclerosis?
Hi Kay,
Sorry to hear about your dual diagnosis. I might suggest using the "Advanced Search" link at the top of the forum page and do a search on "multiple sclerosis" using the "Search within Post subjects and message text" button. You will find some useful posts like this one:
https://myelomabeacon.org/forum/multiple-myeloma-and-multiple-sclerosis-t3316.html#p19336
Sorry to hear about your dual diagnosis. I might suggest using the "Advanced Search" link at the top of the forum page and do a search on "multiple sclerosis" using the "Search within Post subjects and message text" button. You will find some useful posts like this one:
https://myelomabeacon.org/forum/multiple-myeloma-and-multiple-sclerosis-t3316.html#p19336
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Impact of myeloma treatment on multiple sclerosis?
Kay,
I was diagnosed with MGUS in 2008 and multiple scleroris (MS) in 2012. Then I was diagnosed with multiple myeloma in early 2014, I was immediately started on the Revlimid, Velcade, and dexamethasone (RVD) treatment regimen, then had an autologous stem cell transplant in late 2014.
The multiple sclerosis is in a secondary progressive phase. The progression of symptoms was slowed by the stem cell transplant but was not stopped. Now it seems to be progressing a bit faster symptomatically, but the MRIs have shown no new leisions. I have not been on any MS disease modification treatment since neither Avonex (interferon beta-1a) or Copaxone (glatiramer acetate) had any effect on my symptoms. Also, my MS doctor preferred to let me concentrate on treatment of the multiple myeloma.
For now, my multiple myeloma specialist is recommending Kyprolis and I am enrolled in a clinical trial using Kyprolis, Venclexta (venetoclax), and dexamethasone. (I have started a thread chornicling my experience with the Kyprolis-Venclexta-dex regimen) So far, there seems to have been a subjective decrease in neuropathy pain and I will be getting an MRI next month.
We are remaining alert to any increase in neuropathy that might indicate an MS-exacerbated state Realizing that everyone is different, this has been my experience so far.
Best! BN
I was diagnosed with MGUS in 2008 and multiple scleroris (MS) in 2012. Then I was diagnosed with multiple myeloma in early 2014, I was immediately started on the Revlimid, Velcade, and dexamethasone (RVD) treatment regimen, then had an autologous stem cell transplant in late 2014.
The multiple sclerosis is in a secondary progressive phase. The progression of symptoms was slowed by the stem cell transplant but was not stopped. Now it seems to be progressing a bit faster symptomatically, but the MRIs have shown no new leisions. I have not been on any MS disease modification treatment since neither Avonex (interferon beta-1a) or Copaxone (glatiramer acetate) had any effect on my symptoms. Also, my MS doctor preferred to let me concentrate on treatment of the multiple myeloma.
For now, my multiple myeloma specialist is recommending Kyprolis and I am enrolled in a clinical trial using Kyprolis, Venclexta (venetoclax), and dexamethasone. (I have started a thread chornicling my experience with the Kyprolis-Venclexta-dex regimen) So far, there seems to have been a subjective decrease in neuropathy pain and I will be getting an MRI next month.
We are remaining alert to any increase in neuropathy that might indicate an MS-exacerbated state Realizing that everyone is different, this has been my experience so far.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Impact of myeloma treatment on multiple sclerosis?
Thanks, BN.
I would imagine in my case that the multiple sclerosis treatment would also take a step back, or even be stopped, if I have to start treatment for multiple myeloma. I also have a neurologist who is a multiple sclerosis specialist.
At this point, I am high risk smoldering, but if my labs don't improve, I will definitely have anemia and renal dysfunction which, of course, is part of the CRAB criteria.
My hematologist is on the fence about which treatment to use, as she considers me medically fragile with the multiple sclerosis and some cardiac issues. I am fairly sure that I would not do a stem cell transplant at my age (77), and that wasn't even part of the discussion with my hematologist. Before any treatment is started, I plan to get a second opinion from a specialist at a myeloma treatment center.
Thanks again, Kay
I would imagine in my case that the multiple sclerosis treatment would also take a step back, or even be stopped, if I have to start treatment for multiple myeloma. I also have a neurologist who is a multiple sclerosis specialist.
At this point, I am high risk smoldering, but if my labs don't improve, I will definitely have anemia and renal dysfunction which, of course, is part of the CRAB criteria.
My hematologist is on the fence about which treatment to use, as she considers me medically fragile with the multiple sclerosis and some cardiac issues. I am fairly sure that I would not do a stem cell transplant at my age (77), and that wasn't even part of the discussion with my hematologist. Before any treatment is started, I plan to get a second opinion from a specialist at a myeloma treatment center.
Thanks again, Kay
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Kay - Name: Kay Wilson
- Who do you know with myeloma?: SMM
- When were you/they diagnosed?: 2014
- Age at diagnosis: 72
Re: Impact of myeloma treatment on multiple sclerosis?
I don't know if this is applicable to anyone in this thread but there have been some interesting developments in the use of autologous stem cell transplants as therapy for relapsing-remitting MS. Here's a link to an article on a recent study that came out in JAMA a couple of weeks ago:
https://jamanetwork.com/journals/jama/article-abstract/2720728
https://jamanetwork.com/journals/jama/article-abstract/2720728
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Impact of myeloma treatment on multiple sclerosis?
Mike,
For those who are physically able, my opinion is that it’s worth a try. It would be wonderful if you could kill two birds with one stone.
For those who are physically able, my opinion is that it’s worth a try. It would be wonderful if you could kill two birds with one stone.
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Impact of myeloma treatment on multiple sclerosis?
I thought I would update this thread since I just had my annual MRI to assess brain lesions and atrophy resulting from multiple sclerosis. The good news is there have been no changes since my MRI last year, so the myeloma treatment does not seem to affect the multiple sclerosis lesions.
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
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