I was diagnosed a year ago with smoldering myeloma and no CRAB signs or symptoms. 6 months ago my creatinine started to rise 1.4 - 1.6 - 1-8 - 2.0 - 2.6 - At that point my kappa light chains, which had been in the 500's, rose to 1100.
My myeloma doctor would have watched me a bit longer but wanted to make sure my creatinine didn't go really high. Ordinarily he would have done a renal biopsy but my situation was complicated with me being on Plavix and aspirin for coronary stents. My cardiologist did not want me off of these drugs for even a few day prior to the biopsy.
It has now been a year since my stent placements. Many cardiologists withdraw the Plavix after a year. Since I have been treated with Cytoxan [cyclophosphamide] / Velcade / dex, my light chains have come down to the 400 range, but my creatinine is staying between 1.7-1.9. My nephrologist is reconsidering the renal biopsy (although he is not happy about attempting it while I am on aspirin). The rationale is that if my renal disease is not solely due to light chain disease, then my therapy could be cut back.
My story is a bit unique and long (sorry) - I was wondering if anyone else has had a renal biopsy for renal disease related to myeloma?
Thanks
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Re: Kidney biopsy for rising creatinine
Briefly, my creatinine was over 6 when I was diagnosed and it was believed the light chains were the culprit. Dialysis eventually brought me down to 3 and after stopping it my levels have remained in the 1.3 to 1.9 range for 4 years.
My nephrologist doesn't think this is out of range given my history.
My nephrologist doesn't think this is out of range given my history.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Kidney biopsy for rising creatinine
It appears that you have had improvement of both the light chains and the kidney function. And that's great news. Sometimes, the kidney don't completely recover after treatment. In addition, it's possible your kidney function will continue to improve if your light chains get better. While I don't have all the information that your doctors have, I don't know if a kidney biopsy would help in making treatment decisions.
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Kidney biopsy for rising creatinine
Yes, I had a biopsy done.
My case is a little unique in that I only have one kidney due to donating one to my brother back in 1989. It was done, basically, to confirm the nephrologist's suspicions of light chain deposition disease. He was reluctant to do it before he had seen the second blood test results due to the fact that I only had the one kidney and the slim chance of major damage to the kidney if something went wrong.
The second blood test (which included a myeloma marker test) bolstered his suspicion so he ordered the kidney biopsy which confirmed it. At that point I was referred to an oncologist / hematologist and I was diagnosed with light chain multiple myeloma.
Since treatment and a SCT my creatinine now fluctuates between 1.3 and 1.5 (1.7 to 1.8 is actually considered normal for a person with one kidney, so these numbers are very good for me) and my kidney continues to flush out the excess protein that had built up in it.
My case is a little unique in that I only have one kidney due to donating one to my brother back in 1989. It was done, basically, to confirm the nephrologist's suspicions of light chain deposition disease. He was reluctant to do it before he had seen the second blood test results due to the fact that I only had the one kidney and the slim chance of major damage to the kidney if something went wrong.
The second blood test (which included a myeloma marker test) bolstered his suspicion so he ordered the kidney biopsy which confirmed it. At that point I was referred to an oncologist / hematologist and I was diagnosed with light chain multiple myeloma.
Since treatment and a SCT my creatinine now fluctuates between 1.3 and 1.5 (1.7 to 1.8 is actually considered normal for a person with one kidney, so these numbers are very good for me) and my kidney continues to flush out the excess protein that had built up in it.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Kidney biopsy for rising creatinine
I had one done given I have a strange phenomena going on with my free light chains being completely rejected by my kidneys. They wanted to be sure I had no kidney damage as a result of this process, so they ordered up a renal biopsy. The procedure was a breeze and I was none the worse for it later that same day.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Kidney biopsy for rising creatinine
My husband's multiple myeloma was found as a result of a kidney biopsy. The creatinine level for him at diagnosis was 6.7. He is now in the 3.5 range and remains there. It is officially his new normal at this point in time. He had dialysis for 2 HOURS at his initial diagnosis - nothing else. He watches his diet and struggles with anemia at times.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Kidney biopsy for rising creatinine
Hello,
I am in UK and I would first like to say that I enjoy the Beacon very much.
I was diagnosed with myeloma in January 2008. I had Velcade and dexamethasone for my second treatment in 2010. Even then my creatinines were high. They had already diagnosed that my left kidney only did 15% of the work and the right one did 85%.
In the blood test reports I have every 28 days it say the norm is 62-115 umol/L, but you Americans all talk of figures all below 10. So I am not sure what the difference is. But I used to see the kidney specialist and she told me that most of her patients had creatinines over 500, so my figure of 150-180 was not worrying her. so I signed off.
But in October 2012 I started a course of Revlimid (lenalidomide) with heavy dexamethasone doses. It transpired that I was unlucky and probably during the first of second treatments my adrenal gland had collapsed, but it was only late October 2012 that I collapsed and was detoxified.
Then I started again with 15mg Revlimid per day for 3 weeks and one week off. But with just one 2mg dexamethasone every other day. I also have 35 mg every day (2 pills in the morning, one at lunchtime and a half pill at tea time) of hydrocortisone to give me synthetic adrenaline.
It has worked brilliantly with no real side effects (possibly some neuropathy in the legs, mostly between the ankles and calves and a little in the feet, but I already had a bit of feet neuropathy from thalidomide in the first treatment).
Anyway, getting back to creatrinines! Very early 2014 my creatinines have been going up. 180-210 and, when above 200, I am refused the pamidronate [Aredia] I get every 28 days. I think I have missed three so far this year. My lovely haematologist says that pamidronate can affect the kidneys, and now she is thinking it might be the Revlimid, so I have been reduced from 15mg to 10mg for the current cycle.
I am also very bad at drinking to flush out the kidneys of the light chains etc. But I am trying quite hard at present and hope the blood test I do early next week will be below the 200 level for creatinines.
So I am not sure if you are all worrying at creatinine levels far below mine or whether yours are dramatically above mine! In my self I feel fine. I have absolutely no dietary problems or am told not to eat or drink anything. But of all the things in my blood tests the creatinines is the main thing that is high. The light chains and paraprotein levels are more or less the lowest they ever have been. So I am happy at present!
Brian from UK
I am in UK and I would first like to say that I enjoy the Beacon very much.
I was diagnosed with myeloma in January 2008. I had Velcade and dexamethasone for my second treatment in 2010. Even then my creatinines were high. They had already diagnosed that my left kidney only did 15% of the work and the right one did 85%.
In the blood test reports I have every 28 days it say the norm is 62-115 umol/L, but you Americans all talk of figures all below 10. So I am not sure what the difference is. But I used to see the kidney specialist and she told me that most of her patients had creatinines over 500, so my figure of 150-180 was not worrying her. so I signed off.
But in October 2012 I started a course of Revlimid (lenalidomide) with heavy dexamethasone doses. It transpired that I was unlucky and probably during the first of second treatments my adrenal gland had collapsed, but it was only late October 2012 that I collapsed and was detoxified.
Then I started again with 15mg Revlimid per day for 3 weeks and one week off. But with just one 2mg dexamethasone every other day. I also have 35 mg every day (2 pills in the morning, one at lunchtime and a half pill at tea time) of hydrocortisone to give me synthetic adrenaline.
It has worked brilliantly with no real side effects (possibly some neuropathy in the legs, mostly between the ankles and calves and a little in the feet, but I already had a bit of feet neuropathy from thalidomide in the first treatment).
Anyway, getting back to creatrinines! Very early 2014 my creatinines have been going up. 180-210 and, when above 200, I am refused the pamidronate [Aredia] I get every 28 days. I think I have missed three so far this year. My lovely haematologist says that pamidronate can affect the kidneys, and now she is thinking it might be the Revlimid, so I have been reduced from 15mg to 10mg for the current cycle.
I am also very bad at drinking to flush out the kidneys of the light chains etc. But I am trying quite hard at present and hope the blood test I do early next week will be below the 200 level for creatinines.
So I am not sure if you are all worrying at creatinine levels far below mine or whether yours are dramatically above mine! In my self I feel fine. I have absolutely no dietary problems or am told not to eat or drink anything. But of all the things in my blood tests the creatinines is the main thing that is high. The light chains and paraprotein levels are more or less the lowest they ever have been. So I am happy at present!
Brian from UK
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BrianO
7 posts
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