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.

@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.

Jump to this post

Thank you, @cmael , I ordered some today.

REPLY

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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

Jump to this post

@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

REPLY
@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.

Jump to this post

@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

REPLY
@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

Jump to this post

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

REPLY

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.

REPLY
@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?

Jump to this post

@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

REPLY
@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

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

REPLY
@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.

Jump to this post

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?

REPLY
Please sign in or register to post a reply.