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.
Dana, if you don’t mind me asking, do you have PBC? My AST and ALT are within normal ranges. My ALP is always elevated because PBC caused my liver cirrhosis and doesn’t go away after transplant.
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!!
Oh…sorry! Thought we were talking creatinine levels. I have read that Tacrolimus has been noted to have a relatively rare side effect of elevating liver enzymes. Not surprising for any drug metabolized primarily by the liver and used in conjunction with other meds primarily metabolized by the liver, such as Mycophenolate.
Sounds like your transplant team is on top of it by getting you a precautionary ultrasound. We all certainly react differently with our meds.
Thank you so much everyone for sharing your meds, dosages, personal experiences and knowledge!! I find our discussions to be super helpful and emotionally comforting. Sharing experiences with friends going through similar transplant journeys is incredibly valuable to me. I will keep everyone posted after my liver ultrasound! THANK YOU ❤ @athenalee@colleenyoung @contentandwell @joko@danab@rosemarya
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.
Oh, you’re a heart transplant recipient, Dana. So, I guess you don’t have PBC. Has your transplant team mentioned any reasons for elevated ALP levels? I’m just curious…
A couple of weeks after I was discharged from kidney transplant in May, I had a severe infection and was confined in the hospital for 4 days. I was taking 2 capsules of Cellcept, and my doctor completely took me off this med. After a while, I was back on 1 capsule. The infection was on and off. Recently, I was tested positive for both CMV and BK virus. The rejection rate also elevated above normal range. I’m up for kidney biopsy to identify what’s causing it.
The surgery and recovery went well. It’s the meds that are giving me issues. I’m praying that there is nothing serious and early treatment will fix it 🙏🏼
By the way, in addition to 1 capsule 500 mg. Cellcept, I’m also currently taking 6 mg. Tacrolimus and 5 mg. Prednisone.
As an added note, my liver enzymes were also above normal before I was discharged from the surgery. Back then, I was taking 4 Cellcept, 8 Tacrolimus and 20 mg. Prednisone. Really high that my body couldn’t tolerate it. It went back to normal after decreasing the dosages.
A couple of weeks after I was discharged from kidney transplant in May, I had a severe infection and was confined in the hospital for 4 days. I was taking 2 capsules of Cellcept, and my doctor completely took me off this med. After a while, I was back on 1 capsule. The infection was on and off. Recently, I was tested positive for both CMV and BK virus. The rejection rate also elevated above normal range. I’m up for kidney biopsy to identify what’s causing it.
The surgery and recovery went well. It’s the meds that are giving me issues. I’m praying that there is nothing serious and early treatment will fix it 🙏🏼
@leahdrose, I can almost imagine your fear and disappointment at needing to be hospitalized due to an infection after your kidney transplant in May. With your successful recovery this is probably the last thing you could have expected.
I hope and pray that your biopsy will provide information to your kidney transplant team about a possible cause and treatment or medication adjustment.
When will you be having the biopsy?
Oh, you’re a heart transplant recipient, Dana. So, I guess you don’t have PBC. Has your transplant team mentioned any reasons for elevated ALP levels? I’m just curious…
I was told it was related to my on going issues with low mainly platelets I seem to remember or it may have been that I have a couple of viruses that plague me.CMV and Parvio b19. I'm on folic acid for it but actually it wasn't my team at Mayo but my GP that noticed it and put me on Folic acid and it's come down quite a bit . About the time I was having major issues with low blood counts and parvo was positive it actually got up to the 400s. But we seem to have both the viruses and that level stable for the past year or so. So I don't have a definite answer as why but I know it's related somehow to being immusupprest and those 2 viruses cmv and parvo b19 which were both positive about that time they were high. The folic acid has helped a lot and they keep me on a low dose Tacrolimus to alow my immune system to help with the viruses.
By the way, in addition to 1 capsule 500 mg. Cellcept, I’m also currently taking 6 mg. Tacrolimus and 5 mg. Prednisone.
As an added note, my liver enzymes were also above normal before I was discharged from the surgery. Back then, I was taking 4 Cellcept, 8 Tacrolimus and 20 mg. Prednisone. Really high that my body couldn’t tolerate it. It went back to normal after decreasing the dosages.
Hello @leahdrose
Thank you for jumping into the conversation! Do you currently have CMV and BK or have they been resolved? Do you know your current CMV Quant PCR blood test number and BK? After 6 weeks of 900mg Valcyte twice a day, my CMV number went from 140,000 to below <200 which is considered normal after infection. I was VERY frightened during my 6 week bout of CMV so I am sure you are feeling the same. My donor was CMV positive and I was negative. I got CMV approximately 7 months after my kidney transplant. Are you a Mayo Clinic patient? If so, and you are still battling CMV and BK, ask your Transplant Case Manager for a consultation referral to the Infectious Disease Transplant Clinic. You can have a video call, they have access to all of your records, and they are very helpful. They coordinate with transplant and help resolve these scary viruses. Is ID currently involved with your situation along with your Transplant Team? As you know, with our transplants it's a fine line between infection and rejection. It's important to know if your current rejection numbers are caused by infection or not enough immune suppression. To resolve the rejection they will be diagnosing if the active CMV and BK is causing the problem which may mean less Cellcept again so your body can fight off the virus, or if the viruses are resolved and you need an increase in dosage to fight off the rejection, or if it's something else. When is your kidney biopsy and how are you latest CMV and BK blood numbers this week? I assume you are having blood tests weekly?
The great news is that Mayo has an extraordinary team that work together to diagnose and resolve these issues. They see this every day!! Very common problems. It's just another walk in the park for Mayo Transplant and Infectious Disease! You can have confidence that they will diagnose and resolve these issues for you. ❤
Dana, if you don’t mind me asking, do you have PBC? My AST and ALT are within normal ranges. My ALP is always elevated because PBC caused my liver cirrhosis and doesn’t go away after transplant.
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Dana, if you don’t mind me asking, do you have PBC? My AST and ALT are within normal ranges. My ALP is always elevated because PBC caused my liver cirrhosis and doesn’t go away after transplant.
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3 ReactionsOh…sorry! Thought we were talking creatinine levels. I have read that Tacrolimus has been noted to have a relatively rare side effect of elevating liver enzymes. Not surprising for any drug metabolized primarily by the liver and used in conjunction with other meds primarily metabolized by the liver, such as Mycophenolate.
Sounds like your transplant team is on top of it by getting you a precautionary ultrasound. We all certainly react differently with our meds.
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2 ReactionsThank you so much everyone for sharing your meds, dosages, personal experiences and knowledge!! I find our discussions to be super helpful and emotionally comforting. Sharing experiences with friends going through similar transplant journeys is incredibly valuable to me. I will keep everyone posted after my liver ultrasound! THANK YOU ❤ @athenalee @colleenyoung @contentandwell @joko @danab @rosemarya
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2 ReactionsOh, you’re a heart transplant recipient, Dana. So, I guess you don’t have PBC. Has your transplant team mentioned any reasons for elevated ALP levels? I’m just curious…
A couple of weeks after I was discharged from kidney transplant in May, I had a severe infection and was confined in the hospital for 4 days. I was taking 2 capsules of Cellcept, and my doctor completely took me off this med. After a while, I was back on 1 capsule. The infection was on and off. Recently, I was tested positive for both CMV and BK virus. The rejection rate also elevated above normal range. I’m up for kidney biopsy to identify what’s causing it.
The surgery and recovery went well. It’s the meds that are giving me issues. I’m praying that there is nothing serious and early treatment will fix it 🙏🏼
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Like -
Helpful -
Hug
2 ReactionsBy the way, in addition to 1 capsule 500 mg. Cellcept, I’m also currently taking 6 mg. Tacrolimus and 5 mg. Prednisone.
As an added note, my liver enzymes were also above normal before I was discharged from the surgery. Back then, I was taking 4 Cellcept, 8 Tacrolimus and 20 mg. Prednisone. Really high that my body couldn’t tolerate it. It went back to normal after decreasing the dosages.
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2 Reactions@leahdrose, I can almost imagine your fear and disappointment at needing to be hospitalized due to an infection after your kidney transplant in May. With your successful recovery this is probably the last thing you could have expected.
I hope and pray that your biopsy will provide information to your kidney transplant team about a possible cause and treatment or medication adjustment.
When will you be having the biopsy?
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Helpful -
Hug
1 ReactionI was told it was related to my on going issues with low mainly platelets I seem to remember or it may have been that I have a couple of viruses that plague me.CMV and Parvio b19. I'm on folic acid for it but actually it wasn't my team at Mayo but my GP that noticed it and put me on Folic acid and it's come down quite a bit . About the time I was having major issues with low blood counts and parvo was positive it actually got up to the 400s. But we seem to have both the viruses and that level stable for the past year or so. So I don't have a definite answer as why but I know it's related somehow to being immusupprest and those 2 viruses cmv and parvo b19 which were both positive about that time they were high. The folic acid has helped a lot and they keep me on a low dose Tacrolimus to alow my immune system to help with the viruses.
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Like -
Helpful -
Hug
2 ReactionsHello @leahdrose
Thank you for jumping into the conversation! Do you currently have CMV and BK or have they been resolved? Do you know your current CMV Quant PCR blood test number and BK? After 6 weeks of 900mg Valcyte twice a day, my CMV number went from 140,000 to below <200 which is considered normal after infection. I was VERY frightened during my 6 week bout of CMV so I am sure you are feeling the same. My donor was CMV positive and I was negative. I got CMV approximately 7 months after my kidney transplant. Are you a Mayo Clinic patient? If so, and you are still battling CMV and BK, ask your Transplant Case Manager for a consultation referral to the Infectious Disease Transplant Clinic. You can have a video call, they have access to all of your records, and they are very helpful. They coordinate with transplant and help resolve these scary viruses. Is ID currently involved with your situation along with your Transplant Team? As you know, with our transplants it's a fine line between infection and rejection. It's important to know if your current rejection numbers are caused by infection or not enough immune suppression. To resolve the rejection they will be diagnosing if the active CMV and BK is causing the problem which may mean less Cellcept again so your body can fight off the virus, or if the viruses are resolved and you need an increase in dosage to fight off the rejection, or if it's something else. When is your kidney biopsy and how are you latest CMV and BK blood numbers this week? I assume you are having blood tests weekly?
The great news is that Mayo has an extraordinary team that work together to diagnose and resolve these issues. They see this every day!! Very common problems. It's just another walk in the park for Mayo Transplant and Infectious Disease! You can have confidence that they will diagnose and resolve these issues for you. ❤
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2 ReactionsAthena, not that I know of I had to Google it so Im guessing your referring to Primary biliary cirrhosis ?