MGRS Diagnosis

Posted by f019521 @f019521, Dec 28, 2022

I was recently diagnosed with MGRS. My hematologist said that this is very rare but treatable. Started chemotherapy 3 weeks age consisting of CyBorD therapy once per week for 26 weeks. Anyone out there with a similar diagnosis? I would like to hear about your experience and progress. Overall, I feel fine but have low hemoglobin (8. 3) and high creatine (2.4) In time I hope to improve kidney function with this treatment.

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Welcome to Mayo Clinic Connect @f019521
As I was reading up on this Monoclonal Gammopathy of Renal Significance, it appears there are similarities to multiple myeloma, but it is not considered a cancerous condition. How did the diagnosis come about? what was your doctor looking for?

Besides going onto chemotherapy, what has your medical team suggested for you to do? Healthy eating, moderate exercise, and drinking plenty of water will probably go a long way to helping your kidneys. You may want to look into a consult with a renal dietician for tips on your particular needs for a healthy nutrition guideline.
Ginger

REPLY
@gingerw

Welcome to Mayo Clinic Connect @f019521
As I was reading up on this Monoclonal Gammopathy of Renal Significance, it appears there are similarities to multiple myeloma, but it is not considered a cancerous condition. How did the diagnosis come about? what was your doctor looking for?

Besides going onto chemotherapy, what has your medical team suggested for you to do? Healthy eating, moderate exercise, and drinking plenty of water will probably go a long way to helping your kidneys. You may want to look into a consult with a renal dietician for tips on your particular needs for a healthy nutrition guideline.
Ginger

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Thanks for your interest, Ginger. I'm male age 67 with a history of heart disease. Mitral valve replacement 2004, and afib for several years. Otherwise, healthy and active. A few years ago, my primary doctor told me there was an anomaly in my blood work and I should take B12, and we should follow-up annually as part of my regular exam. In late 2019 I noticed swelling in my lower legs and ankles. In January 2020 I visited with a PA and we did some testing for diabetes and heart function. A diuretic was prescribed and after a few weeks the swelling subsided, but I started to have numbness in my feet. At the time I was having frequent issues with afib, so the focus shifted to treating the afib. My cardiologist recommended PVI ablation proceedure, which was done in March 2020. This really helped my afib, but I did continue to have issues with neuropathy in my feet and legs, and also noticed bright red patches just underneath my skin on my lower legs. These red patches would flare up from time to time a fade away after a few days leving a residual rusty stain beneath the surface. As I look back, I feel that these were symptoms of things to come. Fast forward to August 2022. One day I randomly took my blood pressure, and it was very high. I had not been monitoring my blood pressure regularly because I was on medication, and it always seemed to be normal when I did check it. I saw a DR. at my local clinic and she recommended increasing my lisinopril to help with the blood pressure. Blood work and labs were mostly normal, but my kidney function (creatine) was trending higher. I was also concerned about my weight (225) which was higher than I expected. For a couple of weeks I watched my diet and increased my my exercise regimen. In the summer, cycle 50-60 miles per week and I increased this to 70-80 miles per week. As a result, I lost 8 pounds in two weeks, was feeling better about my overall health. About a week later after a 25-mile bike ride I stepped on the scale and my weight was up the 8 pounds I had just lost. This was discouraging and I also noticed to swelling again in my legs and feet. I started taking diuretics again (had not taken for almost two years) but the swelling persisted. Follow-up testing was showing my kidney function was continuing to degrade. By the time I saw my regular Dr. October 20th I had severe swelling in my legs and feet and shortness of breath after just a little exertion. He ordered more testing and a chest x-ray, and the testing indicated congestive heart failure and kidney disease. He increased my diuretics and changed my blood pressure medication, but nothing seemed to help. I had also gained at least 10 more pounds of body weight. A few days later my Dr. called to ask how I was doing, and I said that I was very concerned and didn't want to wait for more testing in the coming weeks. He told me to check myself into the ER at St. Mary's in Rochester. On Friday November 4th, I was admitted at St. Mary's and my treatment began. The team first addressed my blood pressure with a nitro drip which initially helped, but when stopped after an hour or so my blood pressure went back up. They restarted the nitro drip and after a few hours my blood pressure was under better control. That was a rough night with little or no sleep and a bad headache from the nitro drip. The next day the team started aggressive diuretic treatment to get rid of the excess fluid in my system. The next day or two was busy with further testing, kidney ultrasound echocardiogram of my heart and lots of blood work. After a few days the kidney team indicted that they thought I might have MGRS, but would need a kidney biopsy to confirm the diagnosis. After the kidney biopsy they also though a bone marrow biopsy would be needed as well. During this time the diuretics continued to help shed the excess fluid and I lost approximately 20 pound in the first week. This really helped with the shortness of breath and heart failure symptoms. After days of waiting for test results from the biopsies and my INR numbers to get back in range I was released after 13 days. I was sent home with a holter monitor since my afib had persisted while in the hospital. I also had conversion pauses of 5-6 seconds when converting out of afib back to sinus rhythm. On a positive note, I was feeling great and my follow-up echocardiogram show little change in heart function from a few years ago. This greatly reduced my anxiety from the congestive heart failure diagnosis. The first night home from the hospital, I received a call at 4 am from the heart monitoring team. I had a couple of long (5-6 second pauses) in my heart rate coming out of afib and they wanted me to go to the local ER. After some discussion, assured them that I would see my cardiologist ASAP. On Monday November 21st after visiting with my cardiologist, it was decided that a pacemaker would be the best solution to these pauses. Pacemaker was implanted on Friday November25th. I the meantime, I had a consultation with hematology/oncology and the MGRS diagnosis was confirmed, and the chemotherapy treatment (CyBorD) was recommended. Started therapy December 13th and will continue for 26 weeks. I've had no side effects from the therapy and feel very good. I'm optimistic about my prognosis, and I'm hopeful that my kidney function improves over time. I have been told to limit my sodium intake to 2,000 mg per day and restrict my fluid intake to to 2 liters per day. My blood pressure is not ideal, but much closer to normal, and I hope this improves as I regain kidney function. My blood work shows low hemoglobin (8.3) but my team does not seem too concerned about this yet. I'll continue to monitor my weight, blood pressure and heart rhythm as work through this. Also, the testing didn't indicate multiple myeloma, so I'm thankful for that. Thanks again for your interest and I would welcome your comments or recommendations. PJP

REPLY
@f019521

Thanks for your interest, Ginger. I'm male age 67 with a history of heart disease. Mitral valve replacement 2004, and afib for several years. Otherwise, healthy and active. A few years ago, my primary doctor told me there was an anomaly in my blood work and I should take B12, and we should follow-up annually as part of my regular exam. In late 2019 I noticed swelling in my lower legs and ankles. In January 2020 I visited with a PA and we did some testing for diabetes and heart function. A diuretic was prescribed and after a few weeks the swelling subsided, but I started to have numbness in my feet. At the time I was having frequent issues with afib, so the focus shifted to treating the afib. My cardiologist recommended PVI ablation proceedure, which was done in March 2020. This really helped my afib, but I did continue to have issues with neuropathy in my feet and legs, and also noticed bright red patches just underneath my skin on my lower legs. These red patches would flare up from time to time a fade away after a few days leving a residual rusty stain beneath the surface. As I look back, I feel that these were symptoms of things to come. Fast forward to August 2022. One day I randomly took my blood pressure, and it was very high. I had not been monitoring my blood pressure regularly because I was on medication, and it always seemed to be normal when I did check it. I saw a DR. at my local clinic and she recommended increasing my lisinopril to help with the blood pressure. Blood work and labs were mostly normal, but my kidney function (creatine) was trending higher. I was also concerned about my weight (225) which was higher than I expected. For a couple of weeks I watched my diet and increased my my exercise regimen. In the summer, cycle 50-60 miles per week and I increased this to 70-80 miles per week. As a result, I lost 8 pounds in two weeks, was feeling better about my overall health. About a week later after a 25-mile bike ride I stepped on the scale and my weight was up the 8 pounds I had just lost. This was discouraging and I also noticed to swelling again in my legs and feet. I started taking diuretics again (had not taken for almost two years) but the swelling persisted. Follow-up testing was showing my kidney function was continuing to degrade. By the time I saw my regular Dr. October 20th I had severe swelling in my legs and feet and shortness of breath after just a little exertion. He ordered more testing and a chest x-ray, and the testing indicated congestive heart failure and kidney disease. He increased my diuretics and changed my blood pressure medication, but nothing seemed to help. I had also gained at least 10 more pounds of body weight. A few days later my Dr. called to ask how I was doing, and I said that I was very concerned and didn't want to wait for more testing in the coming weeks. He told me to check myself into the ER at St. Mary's in Rochester. On Friday November 4th, I was admitted at St. Mary's and my treatment began. The team first addressed my blood pressure with a nitro drip which initially helped, but when stopped after an hour or so my blood pressure went back up. They restarted the nitro drip and after a few hours my blood pressure was under better control. That was a rough night with little or no sleep and a bad headache from the nitro drip. The next day the team started aggressive diuretic treatment to get rid of the excess fluid in my system. The next day or two was busy with further testing, kidney ultrasound echocardiogram of my heart and lots of blood work. After a few days the kidney team indicted that they thought I might have MGRS, but would need a kidney biopsy to confirm the diagnosis. After the kidney biopsy they also though a bone marrow biopsy would be needed as well. During this time the diuretics continued to help shed the excess fluid and I lost approximately 20 pound in the first week. This really helped with the shortness of breath and heart failure symptoms. After days of waiting for test results from the biopsies and my INR numbers to get back in range I was released after 13 days. I was sent home with a holter monitor since my afib had persisted while in the hospital. I also had conversion pauses of 5-6 seconds when converting out of afib back to sinus rhythm. On a positive note, I was feeling great and my follow-up echocardiogram show little change in heart function from a few years ago. This greatly reduced my anxiety from the congestive heart failure diagnosis. The first night home from the hospital, I received a call at 4 am from the heart monitoring team. I had a couple of long (5-6 second pauses) in my heart rate coming out of afib and they wanted me to go to the local ER. After some discussion, assured them that I would see my cardiologist ASAP. On Monday November 21st after visiting with my cardiologist, it was decided that a pacemaker would be the best solution to these pauses. Pacemaker was implanted on Friday November25th. I the meantime, I had a consultation with hematology/oncology and the MGRS diagnosis was confirmed, and the chemotherapy treatment (CyBorD) was recommended. Started therapy December 13th and will continue for 26 weeks. I've had no side effects from the therapy and feel very good. I'm optimistic about my prognosis, and I'm hopeful that my kidney function improves over time. I have been told to limit my sodium intake to 2,000 mg per day and restrict my fluid intake to to 2 liters per day. My blood pressure is not ideal, but much closer to normal, and I hope this improves as I regain kidney function. My blood work shows low hemoglobin (8.3) but my team does not seem too concerned about this yet. I'll continue to monitor my weight, blood pressure and heart rhythm as work through this. Also, the testing didn't indicate multiple myeloma, so I'm thankful for that. Thanks again for your interest and I would welcome your comments or recommendations. PJP

Jump to this post

I am actually on the road right now. So, please forgive me as I have to delay my response to you. That was quite a history that you related, and I want to be able to address it and your kidney issues. I will check back in on Friday, I promise with some additional information as I think about it.
Ginger

REPLY

I was recently diagnosed with MGRS and am going to start treatment locally in South Dakota. I would be interested to hear about how treatment is effecting you.

REPLY
@msipma

I was recently diagnosed with MGRS and am going to start treatment locally in South Dakota. I would be interested to hear about how treatment is effecting you.

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Welcome @msipma. I'm tagging @f019521 and @gingerw to make sure that they see your post.

What treatment will you get starting for monoclonal gammopathy of renal significance (MGRS)?

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@msipma

I was recently diagnosed with MGRS and am going to start treatment locally in South Dakota. I would be interested to hear about how treatment is effecting you.

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Greetings! I spent a good deal if my life in Spearfish. Where are you going for treatment?

Patty

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@msipma

I was recently diagnosed with MGRS and am going to start treatment locally in South Dakota. I would be interested to hear about how treatment is effecting you.

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@msipma Let me also add my welcome to Mayo clinic Connect!

MGRS is not a common condition to have, but it is manageable. If you read my reply above to @f019521, there is some practical information about living with compromised kidneys. Everyone is different, and you'll want to get as much solid information from your medical team as you can. If you have existing co-health issues, everything, and all your specialists, will need to be on the same level of communication with you and each other! That is critical.

I found this article from Tufts University. The top part gives some additional information for you on this MGRS.
https://www.tuftsmedicalcenter.org/patient-care-services/departments-and-services/cancer-center/clinical-care-services/myeloma-and-amyloid/mgrs
Ginger

REPLY

Thanks Ginger. I also found this article from Tuff University. I had my 4th chemo today for MGRS. Last week my chemo was delayed because I was positive for Covid. Had three remdesivir injections and got over covid quickly. Had a nice visit with my hematologist today. Most of my blood work was marginally better, but my kidney function numbers improved significantly (2.6-1.7). This was very encouraging. My Dr. even said that it would be okay to miss 2 chemo treatments when I'm in Florida in February, assuming my numbers continue to improve.
I'll keep you posted on my progress.

Thanks, Paul J. Proft

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