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.

nimalw | @nimalw | Jan 15, 2022
In reply to @athenalee "Rosemary and others can certainly offer insights…I think it best to do what meets your body..." + (show)
@athenalee

Rosemary and others can certainly offer insights…I think it best to do what meets your body parameters, within the every 12 hour timeframe. I’ve read that for optimum absorption of Tacrolimus it is best to take on an empty stomach, if it doesn’t bother you.

After experimenting with a couple of times, I’ve found that taking my morning dose at 8:30 and pm at 8:30 works well for me. I’m typically up 5-6 am. I have a half cup coffee and half cup protein shake. Take my meds, then eat breakfast/brunch between 9:30-11, which I do at work.

I try to eat between 5-6, so that I have two hours to digest supper before taking my pills. Since we’re supposed to drink a lot of water with our pills, I’ve found this time works so I’m not having to get up in the night to use the bathroom. So far, no stomach issues.

It’s not an easy thing to juggle with work, family needs, one’s body needs, etc. so, perhaps experiment by starting with taking yours at 10. Then 9:30, etc..

Jump to this post

Hi Anthea . Thank you yes am toying with the idea of bringing it to 10 to 10 let's see how it goes .

REPLY
nimalw | @nimalw | Jan 15, 2022
In reply to @rosemarya "@nimalw, Good morning. I will share my experience of what is the best time for me...." + (show)
@rosemarya

@nimalw, Good morning. I will share my experience of what is the best time for me. When I say best time, it is the time that has worked well for my since my transplant in 2009. 8:00 AM and 8:00 PM with minimal adjustments as needed.
My transplant team said to select a time that I knew I could adhere to. I am not confined to eat with/without food because this has allowed me to consistently take my meds, and my levels are stable with a happy liver/kidney. I do, however, still take my bedtime meds like allergy, BP, at bedtime.

Do you take your meds with food? If decide to try an earlier dose, I suggest you make a gradual adjustment. Do you think an earlier dose might be possible for you?

Jump to this post

Hi Rosemary. Thank you replying. I started off at 7.30 /7.30 . But this did not suit me as I struggled with sleep .

Do you fast and hour before and after taking the immunosuppressants?? With the exception of water of course ?

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 15, 2022
In reply to @nimalw "Hi Rosemary. What times of the day are the best to take immunosuppressants? From your Experience...." + (show)
@nimalw

Hi Rosemary. What times of the day are the best to take immunosuppressants? From your Experience. I take at 10.30 am and 10.30pm . I find the late night dose does interfere with the sleep .

Jump to this post

@nimalw, Good morning. I will share my experience of what is the best time for me. When I say best time, it is the time that has worked well for my since my transplant in 2009. 8:00 AM and 8:00 PM with minimal adjustments as needed.
My transplant team said to select a time that I knew I could adhere to. I am not confined to eat with/without food because this has allowed me to consistently take my meds, and my levels are stable with a happy liver/kidney. I do, however, still take my bedtime meds like allergy, BP, at bedtime.

Do you take your meds with food? If decide to try an earlier dose, I suggest you make a gradual adjustment. Do you think an earlier dose might be possible for you?

REPLY
1 reply
athenalee | @athenalee | Jan 15, 2022
In reply to @nimalw "Hi Rosemary. What times of the day are the best to take immunosuppressants? From your Experience...." + (show)
@nimalw

Hi Rosemary. What times of the day are the best to take immunosuppressants? From your Experience. I take at 10.30 am and 10.30pm . I find the late night dose does interfere with the sleep .

Jump to this post

Rosemary and others can certainly offer insights…I think it best to do what meets your body parameters, within the every 12 hour timeframe. I’ve read that for optimum absorption of Tacrolimus it is best to take on an empty stomach, if it doesn’t bother you.

After experimenting with a couple of times, I’ve found that taking my morning dose at 8:30 and pm at 8:30 works well for me. I’m typically up 5-6 am. I have a half cup coffee and half cup protein shake. Take my meds, then eat breakfast/brunch between 9:30-11, which I do at work.

I try to eat between 5-6, so that I have two hours to digest supper before taking my pills. Since we’re supposed to drink a lot of water with our pills, I’ve found this time works so I’m not having to get up in the night to use the bathroom. So far, no stomach issues.

It’s not an easy thing to juggle with work, family needs, one’s body needs, etc. so, perhaps experiment by starting with taking yours at 10. Then 9:30, etc..

REPLY
2 replies
nimalw | @nimalw | Jan 14, 2022
In reply to @rosemarya "Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for..." + (show)
@rosemarya

Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for my transplant, and no signs of neuropathy. We each come to transplant with different health issues, and there is not a simple standard response as to how anyone of us will react. We do have routine labs drawn to measure the level of the drugs to maintain our necessary dose. And that, too, is an individual number that is specific to us.

Jump to this post

Hi Rosemary. What times of the day are the best to take immunosuppressants? From your Experience. I take at 10.30 am and 10.30pm . I find the late night dose does interfere with the sleep .

REPLY
3 replies
JK | @contentandwell | Jan 11, 2022
In reply to @rosemarya "CDC has updated the covid19 schedule for Booster for transplant. I know that for Pfizer we..." + (show)
@rosemarya

CDC has updated the covid19 schedule for Booster for transplant.
I know that for Pfizer we can now get #4 after 5 months instead of 6 months. Yes, I verified this via my patient portal. So- I had my #3 pfizer Aug 16 and will schedule my #4 for next week!!!

Check your vaccine at CDC or ask your transplant team. Maybe you can get your Booster !

Jump to this post

@rosemarya Thanks. I heard that might happen but didn’t know it was official. If that’s true I’m eligible now, my third shot was on August 10th.

I may still wait a bit though because we hope to go to Denver to visit my new granddaughter (and her parents 😉), probably in March and since the vaccine’s protectiveness does wane I will want it as strong as possible. Of course we won’t go if we are still in a surge.

I was mildly sick last week and despite testing negative for Covid I can’t help but wonder, I had the exact symptoms. I still have a dry cough.

My granddaughter is growing so fast! I need to see her.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 11, 2022
In reply to @contentandwell "@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the..." + (show)
@contentandwell

@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the protocol, and then a fourth shot which is our booster. I had my third shot as soon as it was available on August 10th so I am looking forward to my "booster" in February.
JK

Jump to this post

CDC has updated the covid19 schedule for Booster for transplant.
I know that for Pfizer we can now get #4 after 5 months instead of 6 months. Yes, I verified this via my patient portal. So- I had my #3 pfizer Aug 16 and will schedule my #4 for next week!!!

Check your vaccine at CDC or ask your transplant team. Maybe you can get your Booster !

REPLY
1 reply
azdan99 | @azdan99 | Jan 11, 2022
In reply to @contentandwell "@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the..." + (show)
@contentandwell

@nimalw I read that for us immunosuppressed people they are considering 3 shots to be the protocol, and then a fourth shot which is our booster. I had my third shot as soon as it was available on August 10th so I am looking forward to my "booster" in February.
JK

Jump to this post

I agree!

REPLY
Saundrella | @saundrella | Jan 11, 2022
In reply to @rosemarya "Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for..." + (show)
@rosemarya

Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for my transplant, and no signs of neuropathy. We each come to transplant with different health issues, and there is not a simple standard response as to how anyone of us will react. We do have routine labs drawn to measure the level of the drugs to maintain our necessary dose. And that, too, is an individual number that is specific to us.

Jump to this post

Thanks for your input!

REPLY
nimalw | @nimalw | Jan 10, 2022
In reply to @estrada53 "Hi @contentandwell .. I'm in the same boat. Booster in February!" + (show)
@estrada53

Hi @contentandwell .. I'm in the same boat. Booster in February!

Jump to this post

Let's hope it's not 4 5 and 6 !!!!!

REPLY
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