This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

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

@2011panc

@wildcat I am glad to see that you are doing well and have been stable for some time. Thank you for sharing. My interest was tweaked when you said that you are on only 0.5 mg tacrolimus twice daily for immunosuppressants. I have a series of questions regarding your tacrolimus medication: 1) do you have regular blood levels run? 2) what is the range your physicians want you to maintain? 3) what is your level? and 4) does your level deviate or is it stable? I am in the USA and have a pancreas transplant and am currently going through changes in my tacrolimus dosages and levels. Thank you for whatever you are willing to share.

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I don't think I can really help very much as everyone has a different level dependent on how immunosuppressed your doctors wish you to be at that particular time. I actually don't know my level at the moment although I recall once being told that it was too high when i had been taking a lot of pomegranate juice.

I have bloods taken every three months although it was much more often in the early days when my tacrolimus was changed on a regular basis. Sorry I can't be of more help but, on this question, everyone is unique.

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@wildcat I was told that grapefruit juice and pomegranate juice are never allowed with transplant drugs because they can change the strength of the drugs in unpredictable ways. Just curious, were you told pomegranate juice is ok to consume?

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@jolinda

@wildcat I was told that grapefruit juice and pomegranate juice are never allowed with transplant drugs because they can change the strength of the drugs in unpredictable ways. Just curious, were you told pomegranate juice is ok to consume?

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It was my understanding pomelo’s (variation of grapefruit) and grapefruit were no no’s. Can anybody confirm?

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@rodney9999

It was my understanding pomelo’s (variation of grapefruit) and grapefruit were no no’s. Can anybody confirm?

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@rodney9999 My husband was told "no grapefruit". Which is fine by him, as he doesn't like it anyways ;))
Ginger

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I never ingest grapefruit, pomegranates, or Seville oranges. I don't like raw oysters. All of the above were on the do not eat list post transplant. ON a different note. I was told by my Transplant Pharmacy that there is a current shortage of TACROLIMUS and my insurance does not cover brand name Profraf. Any others have the same issues?

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@luckonetj

I never ingest grapefruit, pomegranates, or Seville oranges. I don't like raw oysters. All of the above were on the do not eat list post transplant. ON a different note. I was told by my Transplant Pharmacy that there is a current shortage of TACROLIMUS and my insurance does not cover brand name Profraf. Any others have the same issues?

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Grapefruit juice and/ or grapefruits, should not be consumed, as they throw off the Tac. levels......I never herd anything about pomegranates. There is a shortage of the Tacrolimus, I had to switch, how many years out are you nMedicare should cover the immunosuppressants, for 3yrs., until they change the legislation.

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@ca426

Grapefruit juice and/ or grapefruits, should not be consumed, as they throw off the Tac. levels......I never herd anything about pomegranates. There is a shortage of the Tacrolimus, I had to switch, how many years out are you nMedicare should cover the immunosuppressants, for 3yrs., until they change the legislation.

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Eek, I did not know about the shortage of Tacrolimus or that Medicare only covers immunosuppressants for 3 years. We have a Medicare Advantage plan. Hoping that helps.

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@ca426

Grapefruit juice and/ or grapefruits, should not be consumed, as they throw off the Tac. levels......I never herd anything about pomegranates. There is a shortage of the Tacrolimus, I had to switch, how many years out are you nMedicare should cover the immunosuppressants, for 3yrs., until they change the legislation.

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This is a very interesting discussion for me. I was told absolutely no grapefruit in any form but pomegranate was not mentioned. When my tacrolimus levels suddenly spiked, there was no obvious cause until I remembered that I had been drinking pomegranate juice. I researched this and found that some doctors in North America ( I recall Minneapolis and Nebraska universities) had found evidence of the this link. My tacrolimus went back down when I stopped the pomegranate juice

My doctors were really interested and asked me to submit a Yellow Card to NICE ( our equivalent of your FDA) which means that they will conduct further studies to see if it should be listed as a known drug reaction.

Needless to say, I never drink or eat pomegranate or grapefruit.

There is no shortage of tacrolimus here as far as I am aware. Prograf is the make of choice certainly in Edinburgh and I am not allowed to take any other brand of tacrolimus. I hope this helps.

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@wildcat

This is a very interesting discussion for me. I was told absolutely no grapefruit in any form but pomegranate was not mentioned. When my tacrolimus levels suddenly spiked, there was no obvious cause until I remembered that I had been drinking pomegranate juice. I researched this and found that some doctors in North America ( I recall Minneapolis and Nebraska universities) had found evidence of the this link. My tacrolimus went back down when I stopped the pomegranate juice

My doctors were really interested and asked me to submit a Yellow Card to NICE ( our equivalent of your FDA) which means that they will conduct further studies to see if it should be listed as a known drug reaction.

Needless to say, I never drink or eat pomegranate or grapefruit.

There is no shortage of tacrolimus here as far as I am aware. Prograf is the make of choice certainly in Edinburgh and I am not allowed to take any other brand of tacrolimus. I hope this helps.

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@wildcat I was told to avoid grapefruit and pomegranite right from the start. I also take tacrolimus (prograf) and there is no shortage here. I take 2mg a day. This is the only anti-rejection drug I take.

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@jolinda

@wildcat I was told that grapefruit juice and pomegranate juice are never allowed with transplant drugs because they can change the strength of the drugs in unpredictable ways. Just curious, were you told pomegranate juice is ok to consume?

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@jolinda @wildcat I was also told to not have anything with either grapefruit or pomegranate. I thought maybe I could drink seltzer with
"grapefruit essence" but they told me not even that.

@rodney999 Pomelos are basically grapefruit. Grapefruit was developed from pomelos. There is also an orange that you are not supposed to eat, I think it's Seville oranges.
JK

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