Hi, @hello1234
I had elevated creatinine from tacrolimus. The first thing my MGH team did was to have me drink 80-100 ounces of water a day to try to mitigate it. That helped but not as much as they wanted so they changed me to sirolimus and now my creatinine is very slightly high, more so if I don't drink enough water the previous day. Now my water goal is 60-70 ounces a day, much more doable than 80-100 ounces.
Sirolimus is the only immunosuppressant I am on now. I think I came off of Cellcept within six months after my transplant. When was your transplant?
I was on prednisone too for a long time. I'm five years post-transplant and I just came off of prednisone about six months ago.
I hope your team can find a solution to your high numbers too.
JK
Hello @contentandwell 😊 I hope all is well with you! What is interesting to me is you had a liver transplant and the medication gave you elevated creatinine levels (kidney). I had a kidney transplant and the medication is giving me elevated liver levels. My medication was lowered and my liver numbers improved, but are still slightly elevated so I am going for a liver ultrasound next week. It sounds like they ended up changing you from Tac to sirolimus to protect your kidneys. I think my liver enzymes may be the Cellcept instead of the Tac, but I am only guessing. Do you know why they stopped your Cellcept? Is that what normally happens with liver transplant or did you have a special circumstance that stopped your Cellcept? Thank you so much JK!
Good morning @hello1234, Calcineurin inhibitors, Tacrolimus and Cyclosporine, can affect kidney function and raise creatinine levels, that’s one of the reasons that our levels are monitored. Mycophenolate, so far as my research has shown, doesn’t typically affect kidney function. However, that would be a question for your transplant team. It can definitely, however, as you know cause infections, which can certainly affect our kidneys.
As JK says, the best prevention to keep creatinine levels in normal ranges is to drink at least 80 ounces of water each day, at least for liver transplant recipients. I do this and my levels have always stayed around .55-.65 mg/ dL since my transplant. I take 6 mg Tac and 1,000 mg Mycophenolate each day.
Good morning @athenalee 😊 As always, thank you for your thorough, detailed and well-researched response!! Question - in your research did you see any conversation about Tac or Cellcept causing elevated liver enzymes? I take exactly the same dosage and medications as you! My liver enzymes are slightly elevated. Pre-transplant they were normal so I am assuming it's one of the meds or the combination that is causing the liver to be slightly upset. I have a liver ultrasound scheduled next week. Thank you for jumping in to the conversation Athena!!
Good morning @hello1234, Calcineurin inhibitors, Tacrolimus and Cyclosporine, can affect kidney function and raise creatinine levels, that’s one of the reasons that our levels are monitored. Mycophenolate, so far as my research has shown, doesn’t typically affect kidney function. However, that would be a question for your transplant team. It can definitely, however, as you know cause infections, which can certainly affect our kidneys.
As JK says, the best prevention to keep creatinine levels in normal ranges is to drink at least 80 ounces of water each day, at least for liver transplant recipients. I do this and my levels have always stayed around .55-.65 mg/ dL since my transplant. I take 6 mg Tac and 1,000 mg Mycophenolate each day.
Hello @contentandwell 😊 I hope all is well with you! What is interesting to me is you had a liver transplant and the medication gave you elevated creatinine levels (kidney). I had a kidney transplant and the medication is giving me elevated liver levels. My medication was lowered and my liver numbers improved, but are still slightly elevated so I am going for a liver ultrasound next week. It sounds like they ended up changing you from Tac to sirolimus to protect your kidneys. I think my liver enzymes may be the Cellcept instead of the Tac, but I am only guessing. Do you know why they stopped your Cellcept? Is that what normally happens with liver transplant or did you have a special circumstance that stopped your Cellcept? Thank you so much JK!
@hello1234 Things are fine with me re. my liver transplant. I have really never had problems except for those few glitches from medication.
I think that taking the patient off of Cellcept after a certain amount of time is their protocol. I wish I could remember just how long I took it but it was 5 years ago. Six months rings in my head though. I had no special circumstances. I may have some papers that show that but I am off now to get ready for an appointment so can't look now.
JK
Rosemary, Volunteer Mentor | @rosemarya | Nov 9, 2021
Wow! This conversation is a splendid example of how everybody is different and how we have different reactions, and different needs.
I am popping into this conversation with yet another experience with Cellcept and Tacrolimus. I had a liver and a kidney transplant on 2009. Both organs are from the same donor. I have been taking Tacrolimus (Prograf) and Cellcept Mycophenolate Mofetil) for 12+ years. The only change for me is that my dosages had to be adjusted in the early years. My labs are now at 3 month intervals, with an occasional extra one now and then.
I had to go back and look at my charted lab results (12 years worth) and I can honestly say that my liver function levels have been stable and within the mid-normal range. On the occasions when my liver tests were higher, I have a notation that I had a UTI, or a fever. I was recently checked in the ER for an elevated temperature, and guess what? -elevated liver function, now back to normal.
Also, there was one occasion where I see a notation of an increase in tacrolimus dose followed by a follow-up lab that showed my numbers were higher . Also noted that I was miserable with tremors and lack of concentration. So my tacrolimus was reduced to 'my' normal which is actually (for me) below the suggested trough level, and my labs returned to their happy level.
Hi, I'm only on Tacrolimus but my team has never said I have abnormal enzymes. I'm not sure what is included in those but the Liver panel they run each mouth or 2 seems in the normal level except for one I added a screen shot of mine.
Tacrolimus and Mycophenolate commonly lower our white blood cells, which leave us more susceptible to infections. I’ve read that for some individuals, Mycophenolate can especially leave us vulnerable to increased infection risk. I have three autoimmune diseases, one of which leaves me particularly vulnerable to infections. I’ve had several since my transplant, just over a year ago. My transplant doctor has worked with me to lower my Mycophenolate dose specifically for this reason.
This is from the Mayo info on Mycophenolate: This medicine may increase your risk of developing rare and serious virus infections, such as shingles, herpes, cytomegalovirus (CMV) infection, polyomavirus associated nephropathy (PVAN), and BK virus-associated nephropathy (BKVAN). The BK virus may affect how your kidneys work and cause a transplanted kidney to fail.
It’s ultimately the very nature of our medications that we are all more susceptible to infections, as they work together to suppress our immune systems.
Connect
Connect
Like
Helpful
Hug
I'm tagging the gang on this one. I think @bikermike @rosemarya @gaylea1 @contentandwell @cmael @danab @athenalee might have some thoughts to share.
You might also be interested in this related discussion that @webiondev started.
- Cellcept and Tacrolimus Co-administration https://connect.mayoclinic.org/discussion/cellcept-and-tacrolimus-co-administration/
-
Like -
Helpful -
Hug
1 ReactionHi, @hello1234
I had elevated creatinine from tacrolimus. The first thing my MGH team did was to have me drink 80-100 ounces of water a day to try to mitigate it. That helped but not as much as they wanted so they changed me to sirolimus and now my creatinine is very slightly high, more so if I don't drink enough water the previous day. Now my water goal is 60-70 ounces a day, much more doable than 80-100 ounces.
Sirolimus is the only immunosuppressant I am on now. I think I came off of Cellcept within six months after my transplant. When was your transplant?
I was on prednisone too for a long time. I'm five years post-transplant and I just came off of prednisone about six months ago.
I hope your team can find a solution to your high numbers too.
JK
-
Like -
Helpful -
Hug
2 ReactionsHello @contentandwell 😊 I hope all is well with you! What is interesting to me is you had a liver transplant and the medication gave you elevated creatinine levels (kidney). I had a kidney transplant and the medication is giving me elevated liver levels. My medication was lowered and my liver numbers improved, but are still slightly elevated so I am going for a liver ultrasound next week. It sounds like they ended up changing you from Tac to sirolimus to protect your kidneys. I think my liver enzymes may be the Cellcept instead of the Tac, but I am only guessing. Do you know why they stopped your Cellcept? Is that what normally happens with liver transplant or did you have a special circumstance that stopped your Cellcept? Thank you so much JK!
-
Like -
Helpful -
Hug
3 ReactionsGood morning @hello1234, Calcineurin inhibitors, Tacrolimus and Cyclosporine, can affect kidney function and raise creatinine levels, that’s one of the reasons that our levels are monitored. Mycophenolate, so far as my research has shown, doesn’t typically affect kidney function. However, that would be a question for your transplant team. It can definitely, however, as you know cause infections, which can certainly affect our kidneys.
As JK says, the best prevention to keep creatinine levels in normal ranges is to drink at least 80 ounces of water each day, at least for liver transplant recipients. I do this and my levels have always stayed around .55-.65 mg/ dL since my transplant. I take 6 mg Tac and 1,000 mg Mycophenolate each day.
-
Like -
Helpful -
Hug
2 ReactionsGood morning @athenalee 😊 As always, thank you for your thorough, detailed and well-researched response!! Question - in your research did you see any conversation about Tac or Cellcept causing elevated liver enzymes? I take exactly the same dosage and medications as you! My liver enzymes are slightly elevated. Pre-transplant they were normal so I am assuming it's one of the meds or the combination that is causing the liver to be slightly upset. I have a liver ultrasound scheduled next week. Thank you for jumping in to the conversation Athena!!
-
Like -
Helpful -
Hug
2 ReactionsIt can definitely, however, as you know cause infections, which can certainly affect our kidneys.
Could you expand on this? Do you mean UTI's? Didn't hear this until now. Thanks.
@hello1234 Things are fine with me re. my liver transplant. I have really never had problems except for those few glitches from medication.
I think that taking the patient off of Cellcept after a certain amount of time is their protocol. I wish I could remember just how long I took it but it was 5 years ago. Six months rings in my head though. I had no special circumstances. I may have some papers that show that but I am off now to get ready for an appointment so can't look now.
JK
-
Like -
Helpful -
Hug
2 ReactionsWow! This conversation is a splendid example of how everybody is different and how we have different reactions, and different needs.
I am popping into this conversation with yet another experience with Cellcept and Tacrolimus. I had a liver and a kidney transplant on 2009. Both organs are from the same donor. I have been taking Tacrolimus (Prograf) and Cellcept Mycophenolate Mofetil) for 12+ years. The only change for me is that my dosages had to be adjusted in the early years. My labs are now at 3 month intervals, with an occasional extra one now and then.
I had to go back and look at my charted lab results (12 years worth) and I can honestly say that my liver function levels have been stable and within the mid-normal range. On the occasions when my liver tests were higher, I have a notation that I had a UTI, or a fever. I was recently checked in the ER for an elevated temperature, and guess what? -elevated liver function, now back to normal.
Also, there was one occasion where I see a notation of an increase in tacrolimus dose followed by a follow-up lab that showed my numbers were higher . Also noted that I was miserable with tremors and lack of concentration. So my tacrolimus was reduced to 'my' normal which is actually (for me) below the suggested trough level, and my labs returned to their happy level.
Great sharing, everyone!
-
Like -
Helpful -
Hug
4 ReactionsHi, I'm only on Tacrolimus but my team has never said I have abnormal enzymes. I'm not sure what is included in those but the Liver panel they run each mouth or 2 seems in the normal level except for one I added a screen shot of mine.
Tacrolimus and Mycophenolate commonly lower our white blood cells, which leave us more susceptible to infections. I’ve read that for some individuals, Mycophenolate can especially leave us vulnerable to increased infection risk. I have three autoimmune diseases, one of which leaves me particularly vulnerable to infections. I’ve had several since my transplant, just over a year ago. My transplant doctor has worked with me to lower my Mycophenolate dose specifically for this reason.
This is from the Mayo info on Mycophenolate: This medicine may increase your risk of developing rare and serious virus infections, such as shingles, herpes, cytomegalovirus (CMV) infection, polyomavirus associated nephropathy (PVAN), and BK virus-associated nephropathy (BKVAN). The BK virus may affect how your kidneys work and cause a transplanted kidney to fail.
It’s ultimately the very nature of our medications that we are all more susceptible to infections, as they work together to suppress our immune systems.
-
Like -
Helpful -
Hug
3 Reactions