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Memory issues while taking Tacrolimus

Posted by ssapp1 @ssapp1, Dec 12, 2022

Hi Everyone,
Has anyone had memory issues while taking Tacrolimus? Mainly forgetting a common word and you can’t think of it or short term memory issues? I sure do and I am getting a little nervous at work because of it.
If so, do you do anything to help your memory?
Thank you!!

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hello1234 | @hello1234 | Dec 22, 2022

@blbird33
Happy Holidays to you too! Celebrate your two month post kidney transplant too! ❤

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 22, 2022
In reply to @blbird33 "How many months are you post transplant? I am 2 months post kidney transplant and do..." + (show)
@blbird33

How many months are you post transplant? I am 2 months post kidney transplant and do stumble with memory but not as bad as the first month. I hope my memory gets better each week. I like your idea of focusing on one task at a time. I take 0.5mg in am and same in pm. I had to have mine adjusted as I was shaking so much, could not write, and anxious. Happy holidays, BB

Jump to this post

@blbird33, I am 13 years post transplant. I received a simultaneous liver and kidney transplant in April 2009 at Mayo Rochester. So, I have been taking tacrolimus as one of my immunosuppressant meds for 13+ years.
I used to tremble a lot, especially my hands. This made handwriting impossible for the first 2 - 3 hours after my morning dose. Over time, my medication doses reached a stable dosage and my labs are extended to every 3 months. My tacrolimus has been at a stable dose for, I'm guessing 7 years. My trembles do come back on occasion, bit it is something that I have learned to live with. It is a minor issue, considering the benefits of a healthy liver and kidney!

@mdplastics, I also had to make adjustments when driving. I need a quiet car with no radio or only one passenger, usually my husband. When traveling in an unfamiliar town with traffic, my husband is the driver! It is a plan that works well for us.

REPLY
2 replies
blbird33 | @blbird33 | Dec 22, 2022
In reply to @rosemarya "@blbird33, I am 13 years post transplant. I received a simultaneous liver and kidney transplant in..." + (show)
@rosemarya

@blbird33, I am 13 years post transplant. I received a simultaneous liver and kidney transplant in April 2009 at Mayo Rochester. So, I have been taking tacrolimus as one of my immunosuppressant meds for 13+ years.
I used to tremble a lot, especially my hands. This made handwriting impossible for the first 2 - 3 hours after my morning dose. Over time, my medication doses reached a stable dosage and my labs are extended to every 3 months. My tacrolimus has been at a stable dose for, I'm guessing 7 years. My trembles do come back on occasion, bit it is something that I have learned to live with. It is a minor issue, considering the benefits of a healthy liver and kidney!

@mdplastics, I also had to make adjustments when driving. I need a quiet car with no radio or only one passenger, usually my husband. When traveling in an unfamiliar town with traffic, my husband is the driver! It is a plan that works well for us.

Jump to this post

Thank you for your support. I have to be patient and let this coming year progress, hopefully each month I will be less shaky. I am just ending 2 months post transplant. Happy Holidays! BB

REPLY
1 reply
blbird33 | @blbird33 | Dec 22, 2022
In reply to @hello1234 "@blbird33 Happy Holidays to you too! Celebrate your two month post kidney transplant too! ❤" + (show)
@hello1234

@blbird33
Happy Holidays to you too! Celebrate your two month post kidney transplant too! ❤

Jump to this post

Thank you very much as I sometimes have a difficult time celebrating my miracle. Yes, I choose to celebrate, even if it is by myself due to safety. Merry Christmas, BB

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 22, 2022
In reply to @blbird33 "Thank you for your support. I have to be patient and let this coming year progress,..." + (show)
@blbird33

Thank you for your support. I have to be patient and let this coming year progress, hopefully each month I will be less shaky. I am just ending 2 months post transplant. Happy Holidays! BB

Jump to this post

Do you drink coffee? That might be the culprit.
Do you eat before of after meds? Might be worth experimenting with. If your doctor specified what order to eat and take meds, talk to him/her first.
You are still early in your recovery and your body has it's own schedule. 😀
I forgot to say that I'm a one cup of coffee with breakfast person. Sometimes if I'm having several days of trembles, I skip the coffee for a while.

REPLY
1 reply
mdplastics | @mdplastics | Dec 22, 2022
In reply to @rosemarya "@blbird33, I am 13 years post transplant. I received a simultaneous liver and kidney transplant in..." + (show)
@rosemarya

@blbird33, I am 13 years post transplant. I received a simultaneous liver and kidney transplant in April 2009 at Mayo Rochester. So, I have been taking tacrolimus as one of my immunosuppressant meds for 13+ years.
I used to tremble a lot, especially my hands. This made handwriting impossible for the first 2 - 3 hours after my morning dose. Over time, my medication doses reached a stable dosage and my labs are extended to every 3 months. My tacrolimus has been at a stable dose for, I'm guessing 7 years. My trembles do come back on occasion, bit it is something that I have learned to live with. It is a minor issue, considering the benefits of a healthy liver and kidney!

@mdplastics, I also had to make adjustments when driving. I need a quiet car with no radio or only one passenger, usually my husband. When traveling in an unfamiliar town with traffic, my husband is the driver! It is a plan that works well for us.

Jump to this post

Thank you. A slight hand tremor remains for me too, especially while performing fine motor tasks. Speaking of hands, I also have Focal Dystonia which may or may not be medication related. I have constant tinnitus (ringing in ears) that is a known side effect of Tacrolimus. It has persisted and I have become more or less accustomed to it. More at night, it is tolerable if it doesn’t get worse. Many of my symptoms may be a worsening of chemotherapy, radiation and cancer related side effects that started before transplant and difficult to treat. Cognitive symptoms are the most frustrating.

REPLY
blbird33 | @blbird33 | Dec 23, 2022
In reply to @rosemarya "Do you drink coffee? That might be the culprit. Do you eat before of after meds?..." + (show)
@rosemarya

Do you drink coffee? That might be the culprit.
Do you eat before of after meds? Might be worth experimenting with. If your doctor specified what order to eat and take meds, talk to him/her first.
You are still early in your recovery and your body has it's own schedule. 😀
I forgot to say that I'm a one cup of coffee with breakfast person. Sometimes if I'm having several days of trembles, I skip the coffee for a while.

Jump to this post

I do not drink coffee and no other caffeine. So will be patient. Happy Holidays, BB

REPLY
azdan99 | @azdan99 | Dec 23, 2022

I had a heart transplant 20 years ago and have taken Tacrolimus the entire time. My wife comments frequently that my memory is getting bad. I notice myself that I have a difficult time recalling names of people and places. I am 76 years old and blame some of it on my age. I frequently recall things hours or days later, so the memories are there, just not easy to recall. But, I am alive and well. Thanks be to my God.

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