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?

Interested in more discussions like this? Go to the Transplants Support Group.

jodeej | @jodeej | Jul 11, 2020
In reply to @contentandwell "@jodeej Thanks. After writing my previous post, I remember that Fosomax is oral. I don't think..." + (show)
@contentandwell

@jodeej Thanks. After writing my previous post, I remember that Fosomax is oral. I don't think they would want me to take the oral ones because I have a history of Barrett's Esophagus. It is currently in remission but they don't say it is cured.

That's great that your bones have improved. I know I need to get on something but frankly, with the side-effects, I am sort of leery. I am one of those people who have side-effects frequently. When a number of years ago I was put on lisinopril for high blood pressure I had no idea that cough was a side effect. I went to my then PCP and she immediately knew it was from lisinopril and changed me to a different BP medication. More recently I was put on cholesterol medication. I had no idea that it could cause muscle aches but I happened to mention to a friend who is very medically savvy that my legs were always hurting. She immediately asked if I was on cholesterol medication! So I am off that for now too. I have trouble with a number of other medications also, I just seem to be one of those people who is sensitive to many medications. Of course I had to come off tacrolimus also because of a reaction. 😟
JK

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I know there are some meds that are intravenous, but I would worry that those would cause a worse reaction.

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1 reply
JK | @contentandwell | Jul 11, 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

Jump to this post

@jodeej Thanks. After writing my previous post, I remember that Fosomax is oral. I don't think they would want me to take the oral ones because I have a history of Barrett's Esophagus. It is currently in remission but they don't say it is cured.

That's great that your bones have improved. I know I need to get on something but frankly, with the side-effects, I am sort of leery. I am one of those people who have side-effects frequently. When a number of years ago I was put on lisinopril for high blood pressure I had no idea that cough was a side effect. I went to my then PCP and she immediately knew it was from lisinopril and changed me to a different BP medication. More recently I was put on cholesterol medication. I had no idea that it could cause muscle aches but I happened to mention to a friend who is very medically savvy that my legs were always hurting. She immediately asked if I was on cholesterol medication! So I am off that for now too. I have trouble with a number of other medications also, I just seem to be one of those people who is sensitive to many medications. Of course I had to come off tacrolimus also because of a reaction. 😟
JK

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1 reply
funk8nguy | @funk8nguy | Jul 11, 2020

Kind of off topic but I would suggest getting a 7 day 4 time a day pill organizer that you can remove each day, it makes it a lot easier to put your pills in your pocket.
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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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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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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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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 @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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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.

Jump to this post

@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

REPLY
2 replies
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

Jump to this post

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.

REPLY
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