Hi,
I’m a recently diagnosed multiple myeloma person with a near-lethal high ammonia level. Several cycles of Velcade and dexamethasone have reduced the ammonia to an acceptable level. (You can read about the events leading up to my diagnosis, and my initial treatment and response, in this forum post.)
Does anyone have any information about long-term control of ammonia levels in patients with multiple myeloma?
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Re: Multiple myeloma accompanied by high ammonia levels
Hi George,
Your case is very interesting. I don't recall high ammonia levels occurring as a side effect of multiple myeloma. However, when I searched the forum, it turns out the issue has come up at least twice.
https://myelomabeacon.org/forum/newly-diagnosed-what-is-prognosis-t6452.html
https://myelomabeacon.org/forum/liver-failure-in-multiple-myeloma-t7013.html
In of the forum cases above, it's not clear that the doctors made the connection between multiple myeloma and the elevated ammonia levels that were observed. So your posts are very helpful in highlighting that such a possibility exists.
It's my understanding from doing some more reading on the subject that the ammonia produced in situations such as yours most likely comes directly from the multiple myeloma cells. Although it doesn't happen very often, myeloma cells apparently can produce ammonia.
I guess it's also possible that the elevated ammonia in cases such as yours is due to the body trying to process the protein produced by the myeloma cells. In people who have elevated ammonia levels, but no myeloma, the ammonia is caused by the body not being able to process protein.
In any case, it seems that if you want to control the ammonia production, you basically have to control the multiple myeloma.
Have you been getting regular testing of your ammonia levels in addition to your myeloma markers (M-spike and free light chain levels and ratio) and, if so, does there seem to be any correlation between the results?
Your case is very interesting. I don't recall high ammonia levels occurring as a side effect of multiple myeloma. However, when I searched the forum, it turns out the issue has come up at least twice.
https://myelomabeacon.org/forum/newly-diagnosed-what-is-prognosis-t6452.html
https://myelomabeacon.org/forum/liver-failure-in-multiple-myeloma-t7013.html
In of the forum cases above, it's not clear that the doctors made the connection between multiple myeloma and the elevated ammonia levels that were observed. So your posts are very helpful in highlighting that such a possibility exists.
It's my understanding from doing some more reading on the subject that the ammonia produced in situations such as yours most likely comes directly from the multiple myeloma cells. Although it doesn't happen very often, myeloma cells apparently can produce ammonia.
I guess it's also possible that the elevated ammonia in cases such as yours is due to the body trying to process the protein produced by the myeloma cells. In people who have elevated ammonia levels, but no myeloma, the ammonia is caused by the body not being able to process protein.
In any case, it seems that if you want to control the ammonia production, you basically have to control the multiple myeloma.
Have you been getting regular testing of your ammonia levels in addition to your myeloma markers (M-spike and free light chain levels and ratio) and, if so, does there seem to be any correlation between the results?
Re: Multiple myeloma accompanied by high ammonia levels
Hi George,
So, I may be off base here and I'm certainly not a doctor, but what I think is likely happening is that you may simply have impaired renal (kidney) function as a result of your myeloma. This is the "R" in the myeloma "CRAB" criteria.
Myeloma is notorious for impairing kidney function. This is primarily due to the negative impact that excess free light and heavy chain deposits (and sometimes amyloid protein deposits if you have amyloidosis) have on your kidneys.
Your liver normally produces ammonia as a byproduct of digesting proteins, etc. The liver normally also converts this ammonia to less toxic urea via what is known as the ornithine cycle. To a lesser degree, one's kidneys also perform this same conversion. The kidneys in turn processes and gets rid of the urea from your system.
However, if your kidneys aren't working well, then the urea and ammonia levels build up in your blood. High urea levels (measured as BUN in your comprehensive metabolic panel) is a classic indicator of impaired kidney function and many myeloma patients struggle with their kidney function. Creatinine levels (also measured on your your comprehensive metabolic panel) can also be elevated if you have impaired kidney function.
This cycle is also the reason that doctors sometimes recommend low protein diets to folks with impaired kidney function. If your liver isn't producing as much ammonia and urea from having to break down the protein that you ingest, this in turn will ease the workload on your kidneys.
Do you have high BUN and/or creatinine levels that accompany your high ammonia levels? It would make sense that your ammonia levels would drop if the myeloma treatment was reducing your free light chain and heavy chain outputs and thereby providing relief to your kidneys so that they could better pass the urea in your system and also help convert ammonia to urea.
Also, have you been tested for amyloidosis?
So, I may be off base here and I'm certainly not a doctor, but what I think is likely happening is that you may simply have impaired renal (kidney) function as a result of your myeloma. This is the "R" in the myeloma "CRAB" criteria.
Myeloma is notorious for impairing kidney function. This is primarily due to the negative impact that excess free light and heavy chain deposits (and sometimes amyloid protein deposits if you have amyloidosis) have on your kidneys.
Your liver normally produces ammonia as a byproduct of digesting proteins, etc. The liver normally also converts this ammonia to less toxic urea via what is known as the ornithine cycle. To a lesser degree, one's kidneys also perform this same conversion. The kidneys in turn processes and gets rid of the urea from your system.
However, if your kidneys aren't working well, then the urea and ammonia levels build up in your blood. High urea levels (measured as BUN in your comprehensive metabolic panel) is a classic indicator of impaired kidney function and many myeloma patients struggle with their kidney function. Creatinine levels (also measured on your your comprehensive metabolic panel) can also be elevated if you have impaired kidney function.
This cycle is also the reason that doctors sometimes recommend low protein diets to folks with impaired kidney function. If your liver isn't producing as much ammonia and urea from having to break down the protein that you ingest, this in turn will ease the workload on your kidneys.
Do you have high BUN and/or creatinine levels that accompany your high ammonia levels? It would make sense that your ammonia levels would drop if the myeloma treatment was reducing your free light chain and heavy chain outputs and thereby providing relief to your kidneys so that they could better pass the urea in your system and also help convert ammonia to urea.
Also, have you been tested for amyloidosis?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma accompanied by high ammonia levels
Thank you for your detailed comments. I was told that a high ammonia presentation constitutes about 3% of all multiple myeloma cases, which is rare.
Both of your analyses are true. Although I never had any problems with kidneys or liver before, both of them failed and I was put in a medically induced coma. Definitely, I’m getting tested weekly now. My creatinine level is normal, light chains too, the ratio is slightly off though. The level of uric acid is heightened. M-spike got lower by 50% alongside with the ammonia level from 200+ to 40.
While I was impaired by ammonia, my family found an article where about 30 patients with multiple myeloma had high ammonia levels. All of those who didn’t get treatment for their myeloma died
Those who did had a 66% survival rate. Therefore, I started getting Velcade + dexamethasone weekly and it reduced my ammonia level and M-spike.
Both of your analyses are true. Although I never had any problems with kidneys or liver before, both of them failed and I was put in a medically induced coma. Definitely, I’m getting tested weekly now. My creatinine level is normal, light chains too, the ratio is slightly off though. The level of uric acid is heightened. M-spike got lower by 50% alongside with the ammonia level from 200+ to 40.
While I was impaired by ammonia, my family found an article where about 30 patients with multiple myeloma had high ammonia levels. All of those who didn’t get treatment for their myeloma died
Those who did had a 66% survival rate. Therefore, I started getting Velcade + dexamethasone weekly and it reduced my ammonia level and M-spike.
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• Page 1 of 1