Thank you all for your input. I was also CMV and BK negative, and my donor was positive. Mine came out positive five months after transplant. My CMV DNA PCR was 1.83, CMV DNA Viral Load PCR was 67.20. BK Virus was <500. Having no knowledge on how to interpret these numbers, I did some research but still no clear understanding of it. I'm not a Mayo patient. However, both my UCLA transplant nephrologist and regular nephrologist are working closely together on my cases. My regular nephrologist put me immediately on Valcyte 900 mg. 2x a day. The Cellcept (500 mg) was also stopped. However, my UCLA transplant nephrologist advised that the level was low and the meds should have not been adjusted. The Cellcept was put back on, and the Valcyte was stopped immediately. I did lab works two weeks in a row later, and both came out negative. I have labs again tomorrow and hoping to get new results. I also have an appointment at UCLA next week. You would think after the successful transplant surgery, you win the battle. It's frustrating that these issues are coming up months later which I understand are normal. These viruses are scary. It's like a no win-win situation. One is fighting against the other. You decrease the meds dosage to get rid of the viruses. On the other hand, rejection rate becomes higher. I'm aware that these will be ongoing issues so need to be really cautious. Although faced with these challenges, I'm thankful to receive a new kidney after four years of wait only and without dialysis. I'm also thankful to be a part of this supportive group, hear great advices and learn others' experiences. Thank you for your prayers and well wishes. I hope we are all able to win this fight.
I keep asking my liver transplant doctor if my repeated infections are from Mycophenolate, but she says no. Although, she did reduce my dose in half. My feeling is that it’s a combination of my autoimmune diseases and Mycophenolate.
It is definitely a Catch 22 dilemma, dealing with the medication side effects vs. protecting our new life giving organ. Fortunately, my new liver is doing well! And, I’ll definitely try to keep him happy!
Let us know how your labs and doctor visits go, Leah
Hi Leah, yes CMV seems to be very common in transplant patients. Prayers also for a great out come. They did a similar thing with me with CMV and mine was a human version of Parvo B19. Luckily taking me off cellcept helped alot and now I'm only on Tacrolimus but monitored monthly. So far no issues with rejection and it's been 4 years this January.
Blessing
Thank you Dana for sharing. I’m glad you’re doing well now and just on Tac! I’m hoping I can go that route one of these days. CMV I’m aware of, but I never knew there was a Parvo species just for humans. Yes, PBC is Primary Biliary Cholangitis (or cirrhosis). I had symptoms for about ten years, discussed them with my primary, but she would just dismiss them. She finally paid attention when I developed severe pain in my spleen. By that time I was in stage 3 liver cirrhosis. Be well. Athena
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.
That’s interesting about Folic Acid, Great that it’s helped. My ALP has continued to decline incrementally, which is good. I have low platelets and low WBC. Tac can affect platelets and I’m told low WBC is probably due to my autoimmune diseases.
I keep asking my liver transplant doctor if my repeated infections are from Mycophenolate, but she says no. Although, she did reduce my dose in half. My feeling is that it’s a combination of my autoimmune diseases and Mycophenolate.
It is definitely a Catch 22 dilemma, dealing with the medication side effects vs. protecting our new life giving organ. Fortunately, my new liver is doing well! And, I’ll definitely try to keep him happy!
Let us know how your labs and doctor visits go, Leah
Hi @athenalee 😊 I hope you had a nice day at your new job! I am curious. Now that your liver transplant doctor reduced your Cellcept dosage in half, how much do you take each day? And what does your WBC look like each month? ( I am taking 500mg twice a day and my WBC runs around 4.0 each month.)
Hi @athenalee 😊 I hope you had a nice day at your new job! I am curious. Now that your liver transplant doctor reduced your Cellcept dosage in half, how much do you take each day? And what does your WBC look like each month? ( I am taking 500mg twice a day and my WBC runs around 4.0 each month.)
Colleen Young, Connect Director | @colleenyoung | Aug 27, 2022
Welcome @mlr733, to the transplant group. I thought I would answer you here to bring you into a discussion related to Cellcept so you can get feedback from fellow members like @rosemarya@hello1234@athenalee and others.
You asked:
"I've been taking cell cept for 14 yrs post liver transplant. My liver doctor retired so recently I saw new liver doc, who wants me entirely off cell cept for good. Anyone gone through this sort of issue? Thankx"
Can you give us a bit more information? Did your new doctor explain why s/he wants you off of Cellcept entirely?
Rosemary, Volunteer Mentor | @rosemarya | Aug 27, 2022
@mlr733, I am happy to meet you and I want to welcome you to Connect. My transplant was 13 years ago, and I take both Cellcept and Tacrolimus. I have had the doses adjusted when my doctors notices elevated lab results. I have met recipients who have had antirejection medications changed to a different one due complications, but mine are working quite well for me.
I imagine that you are in shock! First a new doctor, and then hearing that he wants to drop one of your antirejection medications. If I were you, I would question the new doctor about "Why?" I would also question him/her about his experience with liver transplant recipients.
Do you still have contact with your transplant clinic? They should have a definite opinion about this.
When do you see this doctor again?
@mlr733, I am happy to meet you and I want to welcome you to Connect. My transplant was 13 years ago, and I take both Cellcept and Tacrolimus. I have had the doses adjusted when my doctors notices elevated lab results. I have met recipients who have had antirejection medications changed to a different one due complications, but mine are working quite well for me.
I imagine that you are in shock! First a new doctor, and then hearing that he wants to drop one of your antirejection medications. If I were you, I would question the new doctor about "Why?" I would also question him/her about his experience with liver transplant recipients.
Do you still have contact with your transplant clinic? They should have a definite opinion about this.
When do you see this doctor again?
Thank you for your reply, the first thing that came out of his mouth after hello was " why are you still on cell cept", I replied I've always been on cell cept and tecrolimus. He said I didn't need to be on it, I should have been taken off of it years ago. He wanted to start reducing it that day and start bloodwork once a week. I have never heard from any liver doctor nurse or person anything like this. I said I was going on vacation and would be back in a month. He was disappointed. My transplant coordinator call the next day saying to do bloodwork when I return so see him again in November. He is going to do this and I'm feeling like a lab rat. My feelings are if it's not broken don't fix it, I've been feeling great for years and my bloodwork always looks really good and even great they have told me. Thank you again for your input it's the only one I've gotten so far. MLR My transplant clinic is at VCU health, a teaching and research hospital.
I am interested to hear why u are being weened off your cell cept.
How much tacro are you on!
I am 2yrs.post LT.
Congratulations 14yrs. LT that is very good to hear. How often do u see your liver doc.
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I keep asking my liver transplant doctor if my repeated infections are from Mycophenolate, but she says no. Although, she did reduce my dose in half. My feeling is that it’s a combination of my autoimmune diseases and Mycophenolate.
It is definitely a Catch 22 dilemma, dealing with the medication side effects vs. protecting our new life giving organ. Fortunately, my new liver is doing well! And, I’ll definitely try to keep him happy!
Let us know how your labs and doctor visits go, Leah
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3 ReactionsThank you Dana for sharing. I’m glad you’re doing well now and just on Tac! I’m hoping I can go that route one of these days. CMV I’m aware of, but I never knew there was a Parvo species just for humans. Yes, PBC is Primary Biliary Cholangitis (or cirrhosis). I had symptoms for about ten years, discussed them with my primary, but she would just dismiss them. She finally paid attention when I developed severe pain in my spleen. By that time I was in stage 3 liver cirrhosis. Be well. Athena
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Helpful -
Hug
1 ReactionThat’s interesting about Folic Acid, Great that it’s helped. My ALP has continued to decline incrementally, which is good. I have low platelets and low WBC. Tac can affect platelets and I’m told low WBC is probably due to my autoimmune diseases.
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Helpful -
Hug
1 ReactionHi @athenalee 😊 I hope you had a nice day at your new job! I am curious. Now that your liver transplant doctor reduced your Cellcept dosage in half, how much do you take each day? And what does your WBC look like each month? ( I am taking 500mg twice a day and my WBC runs around 4.0 each month.)
Evening @hello1234. I also take 500 mgs twice daily and of late my WBC is at 3.5, so low, but not terribly so.
Thanks for confirming @athenalee 😊 Your Cellcept dosage and WBC number matches mine EXACTLY! As I expected!
Welcome @mlr733, to the transplant group. I thought I would answer you here to bring you into a discussion related to Cellcept so you can get feedback from fellow members like @rosemarya @hello1234 @athenalee and others.
You asked:
"I've been taking cell cept for 14 yrs post liver transplant. My liver doctor retired so recently I saw new liver doc, who wants me entirely off cell cept for good. Anyone gone through this sort of issue? Thankx"
Can you give us a bit more information? Did your new doctor explain why s/he wants you off of Cellcept entirely?
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Like -
Helpful -
Hug
1 Reaction@mlr733, I am happy to meet you and I want to welcome you to Connect. My transplant was 13 years ago, and I take both Cellcept and Tacrolimus. I have had the doses adjusted when my doctors notices elevated lab results. I have met recipients who have had antirejection medications changed to a different one due complications, but mine are working quite well for me.
I imagine that you are in shock! First a new doctor, and then hearing that he wants to drop one of your antirejection medications. If I were you, I would question the new doctor about "Why?" I would also question him/her about his experience with liver transplant recipients.
Do you still have contact with your transplant clinic? They should have a definite opinion about this.
When do you see this doctor again?
-
Like -
Helpful -
Hug
2 ReactionsThank you for your reply, the first thing that came out of his mouth after hello was " why are you still on cell cept", I replied I've always been on cell cept and tecrolimus. He said I didn't need to be on it, I should have been taken off of it years ago. He wanted to start reducing it that day and start bloodwork once a week. I have never heard from any liver doctor nurse or person anything like this. I said I was going on vacation and would be back in a month. He was disappointed. My transplant coordinator call the next day saying to do bloodwork when I return so see him again in November. He is going to do this and I'm feeling like a lab rat. My feelings are if it's not broken don't fix it, I've been feeling great for years and my bloodwork always looks really good and even great they have told me. Thank you again for your input it's the only one I've gotten so far. MLR My transplant clinic is at VCU health, a teaching and research hospital.
I am interested to hear why u are being weened off your cell cept.
How much tacro are you on!
I am 2yrs.post LT.
Congratulations 14yrs. LT that is very good to hear. How often do u see your liver doc.