1. < Transplants

Transplant anti-rejection medications. What's your advice?

Posted by jolinda @jolinda, Apr 23, 2020

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Interested in more discussions like this? Go to the Transplants Support Group.

tjdog | @tjdog | Dec 14, 2021
In reply to @hello1234 "Good morning @tjdog 😊 Wow, you definitely have years of experience with your kidney transplants. It..." + (show)
@hello1234

Good morning @tjdog 😊 Wow, you definitely have years of experience with your kidney transplants. It sounds like your first kidney functioned well from 1994 to 2017, so 20 years, right? That's wonderful! Did you have a living donor?
I am a one year post kidney transplant patient on MMF and Tac too.
Congrats on your new transplant in 2019! My question is, what has been your experience with protocol kidney biopsies? How often did you have them and were they helpful for "catching" signs of rejection or problems or did your docs use other tests to diagnose? Thanks @tjdog

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Hello @hello1234, I hope you are doing well with your new kidney. Both of my transplants were from deceased donors. As for biopsies, I think I got 2 after my first transplant and so far I’ve had 2 after my transplant in 2019. Both of the biopsies on my second transplant were routine. Mayo in AZ has follow up appointments 1 year and 2 years post transplant that includes an ultrasound biopsy. I’ve been fortunate to not have any problems with rejection. Now, my doctor uses lab results to see how my kidney is doing. They monitor my creatinine levels every 2-3 months. They would probably do a biopsy if my level started going up on every test. So far that hasn’t happened. Be happy to answer any questions you have.

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hello1234 | @hello1234 | Dec 14, 2021

Thank you so much @tjdog 😊 I am very happy to meet you. You are a fabulous and unique combination of a recent kidney transplant patient AND a person with a wealth of knowledge from years of transplant experience! ❤ I am happy to report that my kidney function is good. My creatinine is 1.0 and my BUN is 21. Is that close to what you are experiencing too?

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1 reply
tjdog | @tjdog | Dec 14, 2021
In reply to @hello1234 "Thank you so much @tjdog 😊 I am very happy to meet you. You are a..." + (show)
@hello1234

Thank you so much @tjdog 😊 I am very happy to meet you. You are a fabulous and unique combination of a recent kidney transplant patient AND a person with a wealth of knowledge from years of transplant experience! ❤ I am happy to report that my kidney function is good. My creatinine is 1.0 and my BUN is 21. Is that close to what you are experiencing too?

Jump to this post

A creatinine of 1.0 is excellent! Mine goes up and down between 1.4 and 1.7. My latest BUN is 31. But my doctor is fine with that. My problem is I don’t always drink enough water. They want 8-10 cups daily. My creatinine was never under 2.0 with my first transplant in 1994. And it lasted almost 25 years. So you never know. Everyone reacts differently to the transplant and the drugs.

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4 replies
hello1234 | @hello1234 | Dec 14, 2021
In reply to @tjdog "A creatinine of 1.0 is excellent! Mine goes up and down between 1.4 and 1.7. My..." + (show)
@tjdog

A creatinine of 1.0 is excellent! Mine goes up and down between 1.4 and 1.7. My latest BUN is 31. But my doctor is fine with that. My problem is I don’t always drink enough water. They want 8-10 cups daily. My creatinine was never under 2.0 with my first transplant in 1994. And it lasted almost 25 years. So you never know. Everyone reacts differently to the transplant and the drugs.

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Thank you so much for this very comforting information @tjdog ❤
Meeting you has made me very happy and very hopeful that I may get 20 years from my new kidney!! I just turned 61, so 25 years would super wonderful.
Question- Did you have a hemodialysis fistula in your arm before your transplant? My fistula is growing too large and I am planning on having surgery to shut it down. Do you have any experience or know anyone that had that surgery?

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1 reply
tjdog | @tjdog | Dec 15, 2021
In reply to @hello1234 "Thank you so much for this very comforting information @tjdog ❤ Meeting you has made me..." + (show)
@hello1234

Thank you so much for this very comforting information @tjdog ❤
Meeting you has made me very happy and very hopeful that I may get 20 years from my new kidney!! I just turned 61, so 25 years would super wonderful.
Question- Did you have a hemodialysis fistula in your arm before your transplant? My fistula is growing too large and I am planning on having surgery to shut it down. Do you have any experience or know anyone that had that surgery?

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I got a fistula about 6 months before my 2nd transplant. It definitely has gotten larger. It only bothers me at night. I don’t want to hear my heart beat when I’m trying to fall asleep, but I have no plans to shut it down. That’s a decision for you to make in consultation with your doctor.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 15, 2021
In reply to @nimalw "Dear I am in Asia . Here we go direct to Nephrologist weekly visits now it's..." + (show)
@nimalw

Dear I am in Asia . Here we go direct to Nephrologist weekly visits now it's by weekly . I had a mild elevated creatnine in my last test scan was done kidney was fine but bladder retention was there so the doctor thinks it could be the retention that's causing the creatnine spike. He put me on urimax feel much better after taking it . Next test this Saturday. Hope it has settled down . I did pre emotive transplant never did dyalisis. I feel the drug dosage is high . I feel really good just finished golf. Hate creatnine spikes !!! I geuss who likes it !

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@ninalw, Glad to hear that your nephrologist is looking into this. It sounds like you are getting good care. I understand, now why you are concerned about the tacrolimus dosages. I have my hopes up that you will have some answers on your next visit.
It sounds like you are doing very well after the transplant. I am amazed at you playing golf already! As for me, I had a lot of reconditioning to do because I was dependent on a wheelchair and walker prior to my transplant. I was able to go to my son's wedding at 4 months post transplant, and to go on some hiking trails at 9 months.

Is tacrolimus your only immunosuppressive medication?

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1 reply
nimalw | @nimalw | Dec 15, 2021
In reply to @tjdog "A creatinine of 1.0 is excellent! Mine goes up and down between 1.4 and 1.7. My..." + (show)
@tjdog

A creatinine of 1.0 is excellent! Mine goes up and down between 1.4 and 1.7. My latest BUN is 31. But my doctor is fine with that. My problem is I don’t always drink enough water. They want 8-10 cups daily. My creatinine was never under 2.0 with my first transplant in 1994. And it lasted almost 25 years. So you never know. Everyone reacts differently to the transplant and the drugs.

Jump to this post

Yes I know a few who had high creatnine in the 1st year of transplant this is encouraging news for me as I do my test tomorrow. Fingers crossed!!

REPLY
nimalw | @nimalw | Dec 15, 2021
In reply to @rosemarya "@ninalw, Glad to hear that your nephrologist is looking into this. It sounds like you are..." + (show)
@rosemarya

@ninalw, Glad to hear that your nephrologist is looking into this. It sounds like you are getting good care. I understand, now why you are concerned about the tacrolimus dosages. I have my hopes up that you will have some answers on your next visit.
It sounds like you are doing very well after the transplant. I am amazed at you playing golf already! As for me, I had a lot of reconditioning to do because I was dependent on a wheelchair and walker prior to my transplant. I was able to go to my son's wedding at 4 months post transplant, and to go on some hiking trails at 9 months.

Is tacrolimus your only immunosuppressive medication?

Jump to this post

Hi . I take cellcept 2mg . And prednisone 10mg and tacrolimus 4mg daily . Prednisone is a bother I get tremors from it and indian doctor said eat a Banana daily . Seems to help my potassium is 4.1 so I love the Banana but I have been always fit I was on the treadmill day before I went into Hospital with a creatnine of 8 .
But doctor's are extra cautious here they stick to the taper schedule as they dont want rejection episodes

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1 reply
nimalw | @nimalw | Dec 16, 2021
In reply to @nimalw "Hi . I take cellcept 2mg . And prednisone 10mg and tacrolimus 4mg daily . Prednisone..." + (show)
@nimalw

Hi . I take cellcept 2mg . And prednisone 10mg and tacrolimus 4mg daily . Prednisone is a bother I get tremors from it and indian doctor said eat a Banana daily . Seems to help my potassium is 4.1 so I love the Banana but I have been always fit I was on the treadmill day before I went into Hospital with a creatnine of 8 .
But doctor's are extra cautious here they stick to the taper schedule as they dont want rejection episodes

Jump to this post

Sorry
Cellcept 2 grams. Not ml

REPLY
nimalw | @nimalw | Dec 17, 2021
In reply to @tjdog "A creatinine of 1.0 is excellent! Mine goes up and down between 1.4 and 1.7. My..." + (show)
@tjdog

A creatinine of 1.0 is excellent! Mine goes up and down between 1.4 and 1.7. My latest BUN is 31. But my doctor is fine with that. My problem is I don’t always drink enough water. They want 8-10 cups daily. My creatinine was never under 2.0 with my first transplant in 1994. And it lasted almost 25 years. So you never know. Everyone reacts differently to the transplant and the drugs.

Jump to this post

Hi . 25 yrs with your 1st Transplant. That's amazing. Any advice on deit ?

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