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Transplant: Tacrolimus, What’s Your Target Range?

Posted by hello1234 @hello1234, Jun 26, 2022

Hi Transplants!
I am a two year anniversary kidney transplant and my Tacronlimis target range is currently 6 to 8. (When I was newly transplanted my Tacronlimis range was 8 to 10.) I am curious if anyone's Tacronlimis range is lower than 6 to 8 and at what stage was it lowered? Please let me know your experience.
Many thanks! 😊

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jackie421blfdgurl | @jackie421blfdgurl | Jun 29, 2022
In reply to @rosemarya "@hello1234, You are amazing!! No wonder you have so many wonderful questions that we all benefit..." + (show)
@rosemarya

@hello1234, You are amazing!! No wonder you have so many wonderful questions that we all benefit from.
You mentioned tissue testing, and that makes me wonder if you will find information with your kidney biopsy results. You should have had one or two already. Have you looked thru your past history or visit summaries in the portal? There should also be a summary of your transplant surgery.
Happy reading!

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Hello to Rosemary's and
All team members who responded to tacrolemus. As I stated before this October will be 2years. The amount I take is 3 mg in am and 3mg in pm. Doctor always cking levels and kidney levels. So far ok.
I have no symptoms of
Anything thank God.was told to drink more water and not wine!!!!! Kidding
Going for new blood again in July I am on new cholesterol pill for me.hope it works. Love u all🥰.after my 1st surgery I looked up every medical test..x-rays..mri's kept all my records. Research..lv ya

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l0lag0lag0b3 | @l0lag0lag0b3 | Jun 29, 2022
In reply to @loribmt "Hi! While it’s interesting to see what everyone’s dosage is for Tacrolimus, (Prograf) keep in mind..." + (show)
@loribmt

Hi! While it’s interesting to see what everyone’s dosage is for Tacrolimus, (Prograf) keep in mind each person’s requirement is different. What the appropriate level is for one person is not necessarily the optimal amount for another. Too low and there’s a huge risk of rejection of the organ. The body’s immune system views the organ as an invasive/foreign object and its goal is to attack and defend! That’s what our immune systems do. So it’s crucial to keep the tacro at a level that is right for each person’s unique biological construct.

That’s true also with stem cell transplants, where tacrolimus, the anti-rejection/immunosuppressive drug, is used to help avoid Graft vs Host disease until the new immune system learns to recognize the foreign proteins in the recipients body. My dosage was different than four of my cohorts who kept in touch during our recovery periods and into our post transplant life. One person, is 3 years post transplant and still taking Tacro at a fairly higher dosage of 2 mg daily. Anytime she tries to taper, her GVHD flairs as the new immune system still sees her body as a threat. Most stem cell patients can taper off starting around 6 months, I was on it for 2.5 years to avoid GVHD at a very low dose of .5mg daily. But if I remember correctly, I was on 6mg daily initially for a few weeks.

With solid organ transplants it’s my understanding that, over time, you’ll be weaned to the lowest amount required to be able to avoid rejection of the organ. There are a few people who have been able to halt the meds altogether if they have a match that’s very close to their own. But this is done under very close guidance with the transplant team and can take years to happen.

There are clinical trials being held with some breakthrough technology that may allow people with certain transplants to eventually wean off the immunosuppressives altogether! That would be amazing for the millions of organ recipients.

Congratulations on your 2 year anniversary! Are you having any side effects from the Tacro?

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Hello Lori
Question comes to my mind, for cases where the Tacrolimus was stopped after 3 years of kidney transpant, I would assume the level of GFR was >70 & stable at least for over 12 months and Immune system was not severely compromised. ( plus overall the person in concern was fairly stable in general health too .. CBC diff/BP/Lipids/liver/thyroid profiles etc etc)..is this a fair observation..any thoughts
Thanks & Regards

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 29, 2022
In reply to @l0lag0lag0b3 "Hello Lori Question comes to my mind, for cases where the Tacrolimus was stopped after 3..." + (show)
@l0lag0lag0b3

Hello Lori
Question comes to my mind, for cases where the Tacrolimus was stopped after 3 years of kidney transpant, I would assume the level of GFR was >70 & stable at least for over 12 months and Immune system was not severely compromised. ( plus overall the person in concern was fairly stable in general health too .. CBC diff/BP/Lipids/liver/thyroid profiles etc etc)..is this a fair observation..any thoughts
Thanks & Regards

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Hi, Kidney transplant isn’t my area of experience. But from my understanding of kidney function and blood results, I’d say the parameters you outlined would indicate a successful transplant and a stable situation at this time.
I see you had a kidney transplant and your wife was the donor! Wow, well isn’t that more proof that you found your perfect match. ❤️
So, were you able to stop the tacro after 3 years?

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1 reply
l0lag0lag0b3 | @l0lag0lag0b3 | Jun 29, 2022
In reply to @loribmt "Hi, Kidney transplant isn’t my area of experience. But from my understanding of kidney function and..." + (show)
@loribmt

Hi, Kidney transplant isn’t my area of experience. But from my understanding of kidney function and blood results, I’d say the parameters you outlined would indicate a successful transplant and a stable situation at this time.
I see you had a kidney transplant and your wife was the donor! Wow, well isn’t that more proof that you found your perfect match. ❤️
So, were you able to stop the tacro after 3 years?

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Thanks Lori for the complement .. yes we are married 42 years
Someone mentioned to us "Marriage made in Heaven but Performed on Earth" I still cannot believe that I had a match with my wife !
Well I am still taking 1.5mg of Tacrolimus. Let's hope it get reduced..in 2 weeks from now (3 yr anniversary).
Yes I am all for it Tacrolimus reduction.. as it will ease the toxicity and lessen the impact on pancreas.
Regards
Neil

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jun 30, 2022

I am post pancreas transplant recipient for nearly 17 years! I have been on Tacrolimus the whole time. I was initially told that the Tacrolimus lab level should be 5 - 7. I have faithfully gotten the Tacrolimus level drawn ever since. The last level was 4.4. My provider sent me a letter that stated my level and also showed reference ranges for kidney, liver and heart transplants (nothing about pancreas transplants!) and told me my “level is fine”.

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jackie421blfdgurl | @jackie421blfdgurl | Jul 2, 2022

Hi there..Jackie here..2 yesrs October is anniversary.
As of 5-12-22 my tac level was 5.2.. taking 3 mg in am and 3 mg in pm.so far the dose has been the same for awhile. But I need blood wk every 2 months so levels can b monitored.

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2 replies
jennifer0726 | @jennifer0726 | Jul 3, 2022

@hello1234 Hello my friend, I need to send you a message back-sorry things have been a bit busy.
Congratulations on your 2nd transplant anniversary! Mine will be Dec. 7th, but will probably go to Mayo right before Thanksgiving again. My Tacrolimus target range is 5-7, and I take 2 in am, and 1 in pm. I was symptomatic at higher doses with tremors and gastro intestinal symptoms. The lower dose does help with the tremors even though once in a while I still get them. Wishing you a wonderful holiday and summer!

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hello1234 | @hello1234 | Jul 3, 2022

Hi @jennifer0726 It's great to hear from you! I am at my 2 year kidney transplant anniversary and I take 500mg Cellcept twice a day and 6mg long acting Envarsus XR once a day. I have always taken my medication with food in hope of avoiding gastrointestinal problems, but I am now experiencing some acid reflux, etc so the "with food" idea is not working perfectly. I am hopeful that at my visit my Tac will be reduced slightly too. What dosage of Cellcept do you take each day? Has the slightly reduced Tac helped your GI issues and hair loss any? Do you take Protonix, Pepcid or Prilosec each day for your stomach? Wow, we have so much in common during this journey!! I love to compare notes 😊

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1 reply
hello1234 | @hello1234 | Jul 3, 2022
In reply to @cehunt57 "I am post pancreas transplant recipient for nearly 17 years! I have been on Tacrolimus the..." + (show)
@cehunt57

I am post pancreas transplant recipient for nearly 17 years! I have been on Tacrolimus the whole time. I was initially told that the Tacrolimus lab level should be 5 - 7. I have faithfully gotten the Tacrolimus level drawn ever since. The last level was 4.4. My provider sent me a letter that stated my level and also showed reference ranges for kidney, liver and heart transplants (nothing about pancreas transplants!) and told me my “level is fine”.

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Hi @cehunt57 😊 Everytime I see your posts are you remind us that you are 17 years post pancreas transplant, I can't help but SMILE. It's so wonderful! How is everything else going with you? I think you were dealing with diverticulitis. Did that resolve after your visit in the hospital?

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1 reply
hello1234 | @hello1234 | Jul 3, 2022
In reply to @jackie421blfdgurl "Hi there..Jackie here..2 yesrs October is anniversary. As of 5-12-22 my tac level was 5.2.. taking..." + (show)
@jackie421blfdgurl

Hi there..Jackie here..2 yesrs October is anniversary.
As of 5-12-22 my tac level was 5.2.. taking 3 mg in am and 3 mg in pm.so far the dose has been the same for awhile. But I need blood wk every 2 months so levels can b monitored.

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Hi @jackie421blfdgurl 😊 Congratulations on your upcoming October anniversary! In addition to your Tacronlimis, what is your Cellcept dosage? I forget Jackie, are you a 2 year anniversary kidney transplant patient too?

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