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.

@jerrynord

I have heard this before but yesterday I got a message from CVS pharmacy with my Tacrolimus prescription. It said do not drink grapefruit juice or eat grapefruit while taking Tacrolimus. Has anyone heard this?

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Yes, they told me that after my transplant. Also nothing with pomegranate or Seville oranges.

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@gaylea1

@jerrynord yes, there are a multitude of medications that do not interact well with grapefruit. Also, with tacrolimus you need to avoid pomegranates as well.

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Not too long ago, pomegranates were the rage. I don't see it so much now, but it does slip into menues now and then. I don't honestly know how much it would take to interact, so I choose to simply avoid anything questionable.
How does anybody else handle with these hidden ingredients?

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@jerrynord

I have heard this before but yesterday I got a message from CVS pharmacy with my Tacrolimus prescription. It said do not drink grapefruit juice or eat grapefruit while taking Tacrolimus. Has anyone heard this?

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@jerrynord, Thanks for the reminder!

I find it helpful if I re-read the papers that I get with my immunosuppressant medications. Mayo Specialty Pharmacy always includes printed information about my meds in my delivery orders. I get my other medications locally - and if I have an afterhour medicationi from a chain pharmacy I never get the papers. When I asked "Why" I was told that nobody reads them anyway! Hmmm? My independent local pharmacy always includes the paperwork!

For more information:
- Immunosuppression: Watching For and Managing Side Effects
"Some medications and foods may change how immunosuppressant drugs work. Before you use any other medications, talk to your nurse transplant coordinator or transplant pharmacist so they can make sure the new medication is safe to use with your transplant medications. You should do this for both prescription and over-the-counter medications. Over-the-counter medications would include vitamins, supplements, and herbal products. Some common foods and beverages that may affect how your body uses your immunosuppressant drugs include grapefruit or grapefruit juice, sodas with grapefruit juice in them (ie. Squirt™, Fresca™, or Sundrop™), Pomegranate and pomegranate juice (ie. Pom™), Seville oranges, also called Spanish, sour or bitter oranges, and more than 6 clementines per day. These foods should be avoided if you are taking a tacrolimus or cyclosporine product , sirolimus, or everolimus." https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

-Transplant Medications 101: Q&A
Foods to avoid, drug interactions, best time of day to take medications and what to do if I forget a dose.
https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-medications-101-qa/

Does anybody else get notices with their meds? Do you read it? What have you learned or been reminded of by reviewing the information?

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@jerrynord

I have heard this before but yesterday I got a message from CVS pharmacy with my Tacrolimus prescription. It said do not drink grapefruit juice or eat grapefruit while taking Tacrolimus. Has anyone heard this?

Jump to this post

@jerrynord
There are several things that are dangerous to eat/drink if you are taking Tacrolimus! Grapefruit, grapefruit juice, pomegranates, pomegranate juice, Fresca soda and Seville oranges are for sure on the NEVER consume list. These foods and beverages are known to interfere with Tacrolimus and change the potency of the medication in unpredictable ways which leaves you venerable to organ rejection. I'm glad you've chosen a pharmacy that adds warnings to your meds. Did they have any other instructions that could be shared with the group to keep us healthy?

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@jerrynord

I have heard this before but yesterday I got a message from CVS pharmacy with my Tacrolimus prescription. It said do not drink grapefruit juice or eat grapefruit while taking Tacrolimus. Has anyone heard this?

Jump to this post

@jerrynord yes, there are a multitude of medications that do not interact well with grapefruit. Also, with tacrolimus you need to avoid pomegranates as well.

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I have heard this before but yesterday I got a message from CVS pharmacy with my Tacrolimus prescription. It said do not drink grapefruit juice or eat grapefruit while taking Tacrolimus. Has anyone heard this?

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@ladydidehart

My transplant team pharmacist did say that Biotin might help but didn’t recommend a dosage, only that it should be USP. I will be reaching out to my hairdresser as well. Yes, I’m returning for a 4 month visit in a few weeks. I just wanted the perspective of people who had actually gone through this themselves. Thank you!

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@ladydidehart, I'm just wondering, have you been able to go for your 4 month check-up yet?

The 4 month check-up is a big event and I want to invite you to share some of your exprience like the schedule of tests, .procedures, and maybe any suggestions for those who are anticipating their first follow-up. Here is a discussion - Transplant Surgery and Early
Recovery: What's normal? https://connect.mayoclinic.org/discussion/post-liver-transplant/

What did you learn about your hair loss?

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Transplant Medications, anti-rejection medications, immunosuppressant medications - We all take them! Here is a Trending Newsfeed Posts that I want to share with you:
Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

FYI -The Trending Newsfeed Posts are seen at the lower half of the opening Mayo Connect Page - or can be accesses at Pages>Transplant>Newsfeed https://connect.mayoclinic.org/page/transplant/
The transplant page is written ans presented by the transplant staff. It designed to bring relevant and informative transplant information directly to you.

Enjoy your day. I would love to hear from you. How are you handling or learning to live with any side effects?

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@cmael hi yes that is one way of trying to combat a virus. Mine is Parvo b19 and I actually get monthly ivig treatments but they cut back my immunsupresent to just 1.5 mg tacrolimus twice a day and no cellcept as long as there is no rejection issues to help your immune system combat the virus. Realize also I'm not a doctor and I'm also 2.4 years post transplant so each case may be different. But I hope that helps and I also have a lot of faith in my team at Mayo.
I hope you have a blessed day
Dana

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I was at Mayo Rochester last week for my two year checkup. Labs and other tests were good, buts my labs showed some signs of the BK virus. I’ll have it retested next week. She said if it comes back with signs of the virus again, she’ll lower my Cellcept dose. Has anyone else experienced this?

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