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

Posted by jolinda @jolinda, Thu, Apr 23 12:18pm

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?

@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 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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@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
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?

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

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@rosemarya

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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@rosemarya I just avoid anything with them in them and make sure I check ingredients. The ingredients I was told to avoid were grapefruit, pomegranate, and Seville oranges, plus many herbals. I think it's always wise to check the ingredient list when purchasing something new. I had not heard of clementines before when I have those around I would only two, or a maximum three in a day. More often just one.

Good info in the link. Being on sirolimus since tacrolimus was causing a creatinine problem for me I only have to take it once a day. I have chosen to take it without food so I can take a smaller dose. When I changed from taking it with food to without I went from 4mg to 2.5mg. For me the reason was feeling that the fewer drugs I take the better but for people who have to pay for their medications that could be a good reason to take it without food.

I was surprised at how many drugs it said you may take at the beginning. I took tacrolimus, Cellcept, and prednisone. I think I took Cellcept for 6 months and then just the other two. I know many people are able to get off prednisone but due to my blood counts I will probably need to take it forever. For those of you who are taking prednisone, please be aware that it does weaken your bones. I now have osteoporosis because of it.

One more thing, before I take any medications prescribed by other doctors I run it by the transplant team. I think many other doctors are not aware of the potential problems that some medications can cause. To us, it doesn't seem as if transplant patients are such an oddity but when I went to my gynecologist after my transplant he said I was the first patient he had ever had who had a transplant! He was about 60 so not a new doctor either.
JK

Liked by tasher3433

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MY close family knows about certain things that I cannot have, but there are events, like graduation open houses, wedding and baby showers etc., where we really have to be diligent about checking with the host/hostess to see if any of those ingredients are included. Because of the virus, we're not attending those events so much, however.

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@contentandwell

@rosemarya I just avoid anything with them in them and make sure I check ingredients. The ingredients I was told to avoid were grapefruit, pomegranate, and Seville oranges, plus many herbals. I think it's always wise to check the ingredient list when purchasing something new. I had not heard of clementines before when I have those around I would only two, or a maximum three in a day. More often just one.

Good info in the link. Being on sirolimus since tacrolimus was causing a creatinine problem for me I only have to take it once a day. I have chosen to take it without food so I can take a smaller dose. When I changed from taking it with food to without I went from 4mg to 2.5mg. For me the reason was feeling that the fewer drugs I take the better but for people who have to pay for their medications that could be a good reason to take it without food.

I was surprised at how many drugs it said you may take at the beginning. I took tacrolimus, Cellcept, and prednisone. I think I took Cellcept for 6 months and then just the other two. I know many people are able to get off prednisone but due to my blood counts I will probably need to take it forever. For those of you who are taking prednisone, please be aware that it does weaken your bones. I now have osteoporosis because of it.

One more thing, before I take any medications prescribed by other doctors I run it by the transplant team. I think many other doctors are not aware of the potential problems that some medications can cause. To us, it doesn't seem as if transplant patients are such an oddity but when I went to my gynecologist after my transplant he said I was the first patient he had ever had who had a transplant! He was about 60 so not a new doctor either.
JK

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At my recent 2 year checkup at Mayo I saw a endocrinologist, since I have thyroid nodules and have been diagnosed with osteopenia. He put me on Fosamax. I also take Prednizone

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@cmael

MY close family knows about certain things that I cannot have, but there are events, like graduation open houses, wedding and baby showers etc., where we really have to be diligent about checking with the host/hostess to see if any of those ingredients are included. Because of the virus, we're not attending those events so much, however.

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@cmael I don't have to worry about my grapefruit juice being consumed by my husband, due to his transplant. My diet is much more restrictive than his.
Ginger

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@cmael

At my recent 2 year checkup at Mayo I saw a endocrinologist, since I have thyroid nodules and have been diagnosed with osteopenia. He put me on Fosamax. I also take Prednizone

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@cmael Have you had any side-effects from Fosamax? I am still deliberating on which medication I want to encourage my endocrinologist to recommend.
JK

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@jolinda

Hair loss! One of my first side-effects showed up just days after being released from the hospital when I noticed gobs of hair falling out in the shower. I was so grateful for the new kidney and it seemed petty to care about my hair but I worried if it would never stop. One of my doctors at Mayo Clinic theorized that my hair loss was caused from a combination of trauma to my body from surgery, being severely anemic and as a side-effect from one of my anti-rejection drugs. She prescribed Vitron C (an high-potency iron supplement with vitamin c) to treat the anemia but there was nothing else she could do. My hair continued to fall out to a lessening degree for the next two years until it finally rebounded. I will never have the same hair but it got better. I was recently told hair loss should be treated by a dermatologist which I think is interesting.

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My hair has experienced the same loss. My unusually thick individual hairs thinned and the number of hairs on my head crashed. I went from having too much hair for a ponytail holder to only needing the tiny kid stretchy plastic bands. I had a liver transplant and gastric sleeve done at the same time 26 months ago. My hair is not rebounding. I am not anemic.

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While taking tacrolimus:
NO grapefruit: flavoring, juice, peel, dried, if it comes from grapefruit, the answer is NO. If it includes any part of grapefruit in it (mixed juices,, cocktails, flavorings, etc) the answer is NO. Do not consume.
NO pomegranate. It is very popular currently in drinks, salads, juices, mixed drinks, main courses, smoothies, plus as a whole fruit like the grapefruit, etc. Be careful to read labels and do not consume pomegranate.
NO Seville oranges. They are in all kinds of foods from every marmalade to SE Asian foods. They are bitter oranges with jillions of little pips/seeds — they won't be in your orange juice in US stores, but they are in jams and chutneys. Also the main ingredient in Bigarade, a brown French sauce. Do not consume Seville oranges.

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@cmael

A after my transplant two years ago, I was losing a lot of hair, I contacted my transplant team at Mayo and they referred me to the specialty pharmacy. I was told by them to take 1000 mcg of biotin a day. It really helped. I no longer take it. My hair seems to be back to normal.

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Thank you, @cmael , I ordered some today.

Liked by cmael

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@contentandwell

@cmael Have you had any side-effects from Fosamax? I am still deliberating on which medication I want to encourage my endocrinologist to recommend.
JK

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I haven’t noticed any side effects yet from taking Fosamax. I have to take it once a week first thing in the morning at least a half hour before other meds with a full glass of water. I can’t lay down again after taking it. He told me the percentage of problems, like thigh bone fracture, are low.

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@cmael

I haven’t noticed any side effects yet from taking Fosamax. I have to take it once a week first thing in the morning at least a half hour before other meds with a full glass of water. I can’t lay down again after taking it. He told me the percentage of problems, like thigh bone fracture, are low.

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@cmael and @contentandwell I took fosamax for a year or two for low bone density. I never had any problems. The only issue was the inconvenience of when to take it. I did actually grow back some bone. I think it was the combo of the medication, walking and lifting light weights.
Blessings,
JoDee

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