Hi All,
After getting my hand x-ray'd yesterday, I was told that I might have rheumatoid arthritis (RA). I will now be seeing a rheumatologist next month to get tested for RA.
Rheumatoid arthritis runs in my family, so I am prepared to hear that I may indeed have it myself. Anticipating that the rheumatologist may likely suggest a front-line disease-modifying antirheumatic drug (DMARD) treatment such as methotrexate, I am wondering if anyone has information about which RA drugs to consider and which to avoid with respect to increasing the risk of progression of smoldering multiple myeloma or multiple myeloma.
The medical literature and some posts on this forum talk about potential links between rheumatoid arthritis, autoimmune diseases such as rheumatoid arthritis, and multiple myeloma, as well as the risk of secondary cancers from various rheumatoid arthritis drugs. But I am specifically looking for information about which RA drugs to consider, and which to avoid, if you already have myeloma.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Rheumatoid arthritis drugs and smoldering myeloma
Hello,
I am not sure if what I am going to share is exactly what you are asking, but hope it might be helpful, or at least give you some info from which to do more research. I am also smoldering (3.5 years). I just went to the Mayo Clinic (Rochester) for a consult. Previous to that visit, I have received care locally. I decided to seek a consult because my M-spike has been creeping up consistently for the past 2 years. While I was there, I was told that in the next 1-2 months a trial may be opening for people with smoldering myeloma.
Much of what the doctor told me went over my head. But, here is what I recall clearly. The trial is a daily injection of a medication that is used with rheumatoid arthritis. He gave an example of a woman who started this protocal in 2002 and is still smoldering.I know the medication inhibits interleukin-6 and inflammation. I don't know the name because I didn't think my numbers were "bad" enough. We were going to revisit it in 6 months, and I didn't ask all of the specific details. Well, the labs and scans indicate I may be eligible, if the trial opens up. I will be going back in 2 months to follow up, learn about the trial, see if the trial is open, and if it is open determine if I am a candidate.
Again, I'm not sure any of this will help, but I wanted to put it out there, just in case. All the best!
I am not sure if what I am going to share is exactly what you are asking, but hope it might be helpful, or at least give you some info from which to do more research. I am also smoldering (3.5 years). I just went to the Mayo Clinic (Rochester) for a consult. Previous to that visit, I have received care locally. I decided to seek a consult because my M-spike has been creeping up consistently for the past 2 years. While I was there, I was told that in the next 1-2 months a trial may be opening for people with smoldering myeloma.
Much of what the doctor told me went over my head. But, here is what I recall clearly. The trial is a daily injection of a medication that is used with rheumatoid arthritis. He gave an example of a woman who started this protocal in 2002 and is still smoldering.I know the medication inhibits interleukin-6 and inflammation. I don't know the name because I didn't think my numbers were "bad" enough. We were going to revisit it in 6 months, and I didn't ask all of the specific details. Well, the labs and scans indicate I may be eligible, if the trial opens up. I will be going back in 2 months to follow up, learn about the trial, see if the trial is open, and if it is open determine if I am a candidate.
Again, I'm not sure any of this will help, but I wanted to put it out there, just in case. All the best!
Re: Rheumatoid arthritis drugs and smoldering myeloma
Many thanks for the post TMW.
I'm guessing that you might be referring to this study with anakinra (Kineret). Does that ring a bell?
Reference:
Lust, JA, et al,, "Reduction in C‐reactive protein indicates successful targeting of the IL‐1/IL‐6 axis resulting in improved survival in early stage multiple myeloma," American Journal of Hematology, June 2016 (full text of article)
Abstract:
We report the long‐term follow‐up results of a phase II trial of IL‐1 receptor antagonist and low‐dose dexamethasone for early stage multiple myeloma. Patients were eligible if they had smoldering multiple myeloma (SMM) or indolent multiple myeloma (IMM) without the need for immediate therapy. Forty seven patients were enrolled and subsequently treated with IL‐1Ra; in 25/47 low‐dose dexamethasone (20 mg weekly) was added. The primary endpoint was progression‐free survival (PFS). In the clinical trial, three patients achieved a minor response (MR) to IL‐1Ra alone; five patients a partial response (PR) and four patients an MR after addition of dexamethasone. Seven patients showed a decrease in the plasma cell labeling index (PCLI) which paralleled a decrease in the high sensitivity C‐reactive protein (hs‐CRP). The median PFS for the 47 patients was 1116 days (37.2 months). The median PFS for patients without (n = 22) and with (n = 25) a decrease in their baseline hs‐CRP was 326 days (11 months) vs. 3139 days (104 months) respectively (P <0.0001). The median overall survival (OS) for the 47 patients was 3482 days (9.5 years). The median OS for patients without and with a decrease in their baseline hs‐CRP was 2885 days (7.9 years) vs. median not reached, respectively (P = 0.001). In SMM/IMM patients at risk for progression to active myeloma, reduction in the hs‐CRP indicates successful targeting of the IL‐1/IL‐6 axis resulting in improved PFS and OS.
I'm guessing that you might be referring to this study with anakinra (Kineret). Does that ring a bell?
Reference:
Lust, JA, et al,, "Reduction in C‐reactive protein indicates successful targeting of the IL‐1/IL‐6 axis resulting in improved survival in early stage multiple myeloma," American Journal of Hematology, June 2016 (full text of article)
Abstract:
We report the long‐term follow‐up results of a phase II trial of IL‐1 receptor antagonist and low‐dose dexamethasone for early stage multiple myeloma. Patients were eligible if they had smoldering multiple myeloma (SMM) or indolent multiple myeloma (IMM) without the need for immediate therapy. Forty seven patients were enrolled and subsequently treated with IL‐1Ra; in 25/47 low‐dose dexamethasone (20 mg weekly) was added. The primary endpoint was progression‐free survival (PFS). In the clinical trial, three patients achieved a minor response (MR) to IL‐1Ra alone; five patients a partial response (PR) and four patients an MR after addition of dexamethasone. Seven patients showed a decrease in the plasma cell labeling index (PCLI) which paralleled a decrease in the high sensitivity C‐reactive protein (hs‐CRP). The median PFS for the 47 patients was 1116 days (37.2 months). The median PFS for patients without (n = 22) and with (n = 25) a decrease in their baseline hs‐CRP was 326 days (11 months) vs. 3139 days (104 months) respectively (P <0.0001). The median overall survival (OS) for the 47 patients was 3482 days (9.5 years). The median OS for patients without and with a decrease in their baseline hs‐CRP was 2885 days (7.9 years) vs. median not reached, respectively (P = 0.001). In SMM/IMM patients at risk for progression to active myeloma, reduction in the hs‐CRP indicates successful targeting of the IL‐1/IL‐6 axis resulting in improved PFS and OS.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Rheumatoid arthritis drugs and smoldering myeloma
Hi Multibilly,
You are welcome. I am not sure if that is the study or not. We didn't discuss it in great detail, mostly because we didn't think I was at the point of qualifying. He mentioned the daily injection, but not the dex. However, it certainly could be the study. As I learn more (appointment in June) I will share any new information.
Good luck, and keep us posted as to what you decide to do. I will say that, personally, my M-spike does seem to generally trend with my SED rate (higher the SED rate, the higher the M-spike) and also with CRP.
Take care.
You are welcome. I am not sure if that is the study or not. We didn't discuss it in great detail, mostly because we didn't think I was at the point of qualifying. He mentioned the daily injection, but not the dex. However, it certainly could be the study. As I learn more (appointment in June) I will share any new information.
Good luck, and keep us posted as to what you decide to do. I will say that, personally, my M-spike does seem to generally trend with my SED rate (higher the SED rate, the higher the M-spike) and also with CRP.
Take care.
Re: Rheumatoid arthritis drugs and smoldering myeloma
If it's a daily injection, then I'm stumped.
When I first saw TMW's post, I thought the trial might be for Actemra (tocilizumab), which is an IL6 inhibitor. I thought this because of this report:
"Successful Treatment of a Patient with Rheumatoid Arthritis and IgA-Kappa Multiple Myeloma with Tocilizumab"
http://joi.jlc.jst.go.jp/JST.JSTAGE/internalmedicine/50.4636
Abstract:
A 63-year-old woman receiving tumor necrosis factor (TNF) inhibitors for rheumatoid arthritis (RA) was found to have smoldering IgA-kappa type multiple myeloma (multiple myeloma). Retrospective examination of stored serum samples revealed a steady increase of serum IgA levels after the start of TNF inhibitor therapy. The patient's articular symptoms showed marked exacerbation when TNF inhibitors were discontinued because of fear of worsening the multiple myeloma. Tocilizumab improved RA symptoms dramatically and stabilized serum IgA levels for 13 months after a transient steep rise. This case suggests that tocilizumab can be used safely in patients with inflammatory disorders with coexisting multiple myeloma.
However, if I'm not mistaken, Actemra is dosed once a week, not once daily. So based on TMW's latest information, it's probably not the drug that's going to be tested.
I'm a little confused, Multibilly, why you might have thought the drug mentioned to TMW might be Kineret (anakinra), given that it blocks IL1, not IL6.
When I first saw TMW's post, I thought the trial might be for Actemra (tocilizumab), which is an IL6 inhibitor. I thought this because of this report:
"Successful Treatment of a Patient with Rheumatoid Arthritis and IgA-Kappa Multiple Myeloma with Tocilizumab"
http://joi.jlc.jst.go.jp/JST.JSTAGE/internalmedicine/50.4636
Abstract:
A 63-year-old woman receiving tumor necrosis factor (TNF) inhibitors for rheumatoid arthritis (RA) was found to have smoldering IgA-kappa type multiple myeloma (multiple myeloma). Retrospective examination of stored serum samples revealed a steady increase of serum IgA levels after the start of TNF inhibitor therapy. The patient's articular symptoms showed marked exacerbation when TNF inhibitors were discontinued because of fear of worsening the multiple myeloma. Tocilizumab improved RA symptoms dramatically and stabilized serum IgA levels for 13 months after a transient steep rise. This case suggests that tocilizumab can be used safely in patients with inflammatory disorders with coexisting multiple myeloma.
However, if I'm not mistaken, Actemra is dosed once a week, not once daily. So based on TMW's latest information, it's probably not the drug that's going to be tested.
I'm a little confused, Multibilly, why you might have thought the drug mentioned to TMW might be Kineret (anakinra), given that it blocks IL1, not IL6.
Re: Rheumatoid arthritis drugs and smoldering myeloma
Hi Terry,
I assumed the drug in the trial was anakinra (Kineret) since the trial I referenced above started in the same year that TMW mentioned (2002), involved a rheumatoid arthritis drug that requires a daily injection, utilizes a drug that works on IL-6 and involves a trial that was conducted at the Mayo. If you read through the literature, you will find that IL-6 levels are reduced by the action of anakirna blocking IL-1β. And since IL-6 has been implicated as a growth factor for multiple myeloma cells, that was one of the reasons that the scientists chose to use anakinra in the above referenced trial.
Anyway, that was my reasoning.
I assumed the drug in the trial was anakinra (Kineret) since the trial I referenced above started in the same year that TMW mentioned (2002), involved a rheumatoid arthritis drug that requires a daily injection, utilizes a drug that works on IL-6 and involves a trial that was conducted at the Mayo. If you read through the literature, you will find that IL-6 levels are reduced by the action of anakirna blocking IL-1β. And since IL-6 has been implicated as a growth factor for multiple myeloma cells, that was one of the reasons that the scientists chose to use anakinra in the above referenced trial.
Anyway, that was my reasoning.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Rheumatoid arthritis drugs and smoldering myeloma
Hi All,
Although I did not find a clinical trial matching your search, I thought this was an interesting article:
Rossi, J-F, et al, "Interleukin-6 as a Therapeutic Target," Clinical Cancer Research, March 2105 (full text of article)
The authors point out that the IL6 inhibitors, siltuximab (Sylvant) and tocilizumab (Actemra), which are biologics and given by injection, work against some autoimmune diseases, such as rheumatoid arthritis, and also some cancers. So maybe one of those drugs is in the clinical trial.
I also read that the biologic drugs against rheumatoid arthritis are injectable. Many patients do not like getting injections, so research is ongoing to find oral pills for those drugs.
Although I did not find a clinical trial matching your search, I thought this was an interesting article:
Rossi, J-F, et al, "Interleukin-6 as a Therapeutic Target," Clinical Cancer Research, March 2105 (full text of article)
The authors point out that the IL6 inhibitors, siltuximab (Sylvant) and tocilizumab (Actemra), which are biologics and given by injection, work against some autoimmune diseases, such as rheumatoid arthritis, and also some cancers. So maybe one of those drugs is in the clinical trial.
I also read that the biologic drugs against rheumatoid arthritis are injectable. Many patients do not like getting injections, so research is ongoing to find oral pills for those drugs.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Rheumatoid arthritis drugs and smoldering myeloma
Hey Multibilly,
I don't have the answer to your question, but I am caregiver with rheumatoid arthritis currently in remission. I was formerly on methotrexate and Enbrel (etanercept).
Have you considered taking curcumin for both your rheumatoid arthritis and your smoldering myeloma?
Best,
Jeannie
I don't have the answer to your question, but I am caregiver with rheumatoid arthritis currently in remission. I was formerly on methotrexate and Enbrel (etanercept).
Have you considered taking curcumin for both your rheumatoid arthritis and your smoldering myeloma?
Best,
Jeannie
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Rheumatoid arthritis drugs and smoldering myeloma
Thanks Jeannie,
I have been taking massive daily amounts of curcumin ever since my smoldering myeloma diagnosis over 6 years ago. It may be one of the reasons that I am still smoldering, but I will never know for sure.
I have been taking massive daily amounts of curcumin ever since my smoldering myeloma diagnosis over 6 years ago. It may be one of the reasons that I am still smoldering, but I will never know for sure.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Rheumatoid arthritis drugs and smoldering myeloma
When you talk about massive amounts of a particular supplement, I am confused. It's my understanding that massive amounts of any supplement are never encouraged. I have been smoldering for a long time too. No supplements, but I do gluten free because it was recommended to me for my thyroid condition. I am, however, able to eat a very good diet and buy organic as I can afford. I use no lunch meats or sausages and try to keep veggies and fruit high along with healthy gluten free grains.
Is it possible that high supplements contributes to other problems you are experiencing? Hope not..
Marti
Is it possible that high supplements contributes to other problems you are experiencing? Hope not..
Marti
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
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