1. < Transplants

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?

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Jeanene Headlee | @jeanene | Jul 10, 2020
In reply to @jolinda "Hair loss! One of my first side-effects showed up just days after being released from the..." + (show)
@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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2 replies
Jeanene Headlee | @jeanene | Jul 10, 2020

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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Jeanene Headlee | @jeanene | Jul 10, 2020
In reply to @cmael "A after my transplant two years ago, I was losing a lot of hair, I contacted..." + (show)
@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.

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cmael | @cmael | Jul 10, 2020
In reply to @contentandwell "@cmael Have you had any side-effects from Fosamax? I am still deliberating on which medication I..." + (show)
@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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1 reply
jodeej | @jodeej | Jul 10, 2020
In reply to @cmael "I haven’t noticed any side effects yet from taking Fosamax. I have to take it once..." + (show)
@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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2 replies
rwalkie | @rwalkie | Jul 10, 2020
In reply to @contentandwell "@cmael Have you had any side-effects from Fosamax? I am still deliberating on which medication I..." + (show)
@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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@cmael I had a kidney transplant 5 years ago and after my 2nd bone density, my Endocrinologist started me on a ProLiant injection every 6 months for osteopenia. I haven't had any side effects.

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cmael | @cmael | Jul 10, 2020
In reply to @jodeej "@cmael and @contentandwell I took fosamax for a year or two for low bone density. I..." + (show)
@jodeej

@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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That’s encouraging!

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1 reply
rwalkie | @rwalkie | Jul 10, 2020
In reply to @cmael "That’s encouraging!" + (show)
@cmael

That’s encouraging!

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I have a misspelled word that should read Prolia.

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gaylea1 | @gaylea1 | Jul 10, 2020
In reply to @jeanene "My hair has experienced the same loss. My unusually thick individual hairs thinned and the number..." + (show)
@jeanene

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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@jeanene several of us have had the same problem. I was advised to take Biotin and I did for a few months. My hair is now thicker and softer than it ever was before.

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jolinda | @jolinda | Jul 10, 2020
In reply to @jeanene "My hair has experienced the same loss. My unusually thick individual hairs thinned and the number..." + (show)
@jeanene

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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@jeanene
Congrats on your successful surgery!!! I'm so glad you made it through everything ok, that's a big surgery. I met Scott the first patient to have the combo surgery like you did, I also met his surgeon who was so compassionate and brilliant. Isn't it great that they can do both procedures now. I'm sorry you've experienced hair loss after surgery, what do the docs say about it?

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