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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@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 .

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@nimalw I realized you addressed @rosemarya but I hope you don't mind if I also respond with my experiences with my immunosuppressant.

I have to go for tests every other month and that needs to be basically during the 23rd hour since I took my immunosuppressant - I only take it in the morning. So I generally take it shortly before 8:00 in the morning which allows me to get to the lab between 7:00 and 8:00 when I need to go for my labwork.

Initially I didn't bother to consider food vs empty stomach but then I realized that when they said to take it either with or without food they probably actually meant to be consistent with which way you did it. I spoke to my transplant team and chose to try taking it without food figuring that way I would be able to take less. At that time I was taking 4mg. When I started taking it without food (I wait an hour before eating) I was able to drop to 2.5mg a day and maintain the same level of protection. The transplant team followed me more closely than usual with more frequent testing to check the results of that change.

Do you have to coordinate your medications with getting lab work done? That can certainly make a difference. Also, if you choose to take it without regard to food and plan to eat either prior to taking it or soon after that too can make a difference, it certainly did with me.
JK

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@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..

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Thank you Anthea . I need to sort my sleeplessness first but the good news is the prednisone dose was reduced to 7.5mg and 2 other drugs taken off last week . I feel a slight improvement let's see how things go . One day at a time

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@contentandwell

@nimalw I realized you addressed @rosemarya but I hope you don't mind if I also respond with my experiences with my immunosuppressant.

I have to go for tests every other month and that needs to be basically during the 23rd hour since I took my immunosuppressant - I only take it in the morning. So I generally take it shortly before 8:00 in the morning which allows me to get to the lab between 7:00 and 8:00 when I need to go for my labwork.

Initially I didn't bother to consider food vs empty stomach but then I realized that when they said to take it either with or without food they probably actually meant to be consistent with which way you did it. I spoke to my transplant team and chose to try taking it without food figuring that way I would be able to take less. At that time I was taking 4mg. When I started taking it without food (I wait an hour before eating) I was able to drop to 2.5mg a day and maintain the same level of protection. The transplant team followed me more closely than usual with more frequent testing to check the results of that change.

Do you have to coordinate your medications with getting lab work done? That can certainly make a difference. Also, if you choose to take it without regard to food and plan to eat either prior to taking it or soon after that too can make a difference, it certainly did with me.
JK

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Hi Jk. Thanks for your reply yes I do my blood works every 2 weeks . I visit my Neph every 2 weeks as well . I was told fast an hour before and after immunosuppressants. I am on 4mg prograff and 2 grams cellcept daily .
Let's see how things progress. Stay safe . 🙏

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@nimalw

Thank you Anthea . I need to sort my sleeplessness first but the good news is the prednisone dose was reduced to 7.5mg and 2 other drugs taken off last week . I feel a slight improvement let's see how things go . One day at a time

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Yes…baby steps are always a good sign! Reducing prednisone may help your sleeplessness. I have hallucinations on prednisone so fortunately was taken off it soon after my transplant.

I do have sleep issues sometimes due to an autoimmune disease. I take melatonin once or twice a week. Have you tried it? If not, maybe ask your transplant team about it. It comes in various doses, so easy to find a dose that fits one’s body.

Best wishes for healthy sleep!

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@nimalw

Hi Jk. Thanks for your reply yes I do my blood works every 2 weeks . I visit my Neph every 2 weeks as well . I was told fast an hour before and after immunosuppressants. I am on 4mg prograff and 2 grams cellcept daily .
Let's see how things progress. Stay safe . 🙏

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@nimalw I do the same for fasting, although since I take mine first thing in the morning I'm not concerned about before. I'm surprised that it's only an hour before though because if you eat it takes more than an hour for the food to leave your stomach. I've seen as long as four hours before taking a medication but I think two hours is generally the guideline.

It really does make a difference as proved by when I made the change. A lot of people are unaware of that and they feel that they get the same results no matter how they take it but I think it may simply be that without even thinking about it, on the day of testing, or on the day before, they generally do the same thing as usual so that's why it's consistent. Of course some people may just absorb their medications differently I suppose too.
JK

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@contentandwell

@nimalw I do the same for fasting, although since I take mine first thing in the morning I'm not concerned about before. I'm surprised that it's only an hour before though because if you eat it takes more than an hour for the food to leave your stomach. I've seen as long as four hours before taking a medication but I think two hours is generally the guideline.

It really does make a difference as proved by when I made the change. A lot of people are unaware of that and they feel that they get the same results no matter how they take it but I think it may simply be that without even thinking about it, on the day of testing, or on the day before, they generally do the same thing as usual so that's why it's consistent. Of course some people may just absorb their medications differently I suppose too.
JK

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A freind of mine who is on his 6th after Transplant says he does not fast at all only take them on time!!!! His tac levels are 6 and he constantly monitors them

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@athenalee

Yes…baby steps are always a good sign! Reducing prednisone may help your sleeplessness. I have hallucinations on prednisone so fortunately was taken off it soon after my transplant.

I do have sleep issues sometimes due to an autoimmune disease. I take melatonin once or twice a week. Have you tried it? If not, maybe ask your transplant team about it. It comes in various doses, so easy to find a dose that fits one’s body.

Best wishes for healthy sleep!

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Hi Anthea . I think the pred reduction has helped! Sleeping has improved fingers crossed
I have heard of melatonin. Hopefully I dont need it now . Stay safe

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@nimalw

A freind of mine who is on his 6th after Transplant says he does not fast at all only take them on time!!!! His tac levels are 6 and he constantly monitors them

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@nimalw The important thing is consistency, either take them with food or without food but be consistent.

You say he constantly monitors his tac levels. Can he do that at home or is it that he gets frequent lab work done for his transplant center as I do every other month? Most people, if they take their immunosuppressants at the same time every day actually are fairly consistent in whether they are taking them within a time range of eating or not.
JK

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@contentandwell

@nimalw The important thing is consistency, either take them with food or without food but be consistent.

You say he constantly monitors his tac levels. Can he do that at home or is it that he gets frequent lab work done for his transplant center as I do every other month? Most people, if they take their immunosuppressants at the same time every day actually are fairly consistent in whether they are taking them within a time range of eating or not.
JK

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Hi JK. He monitors his tac levels every 2 months . It's at 6 now and his creatnine is 1 .

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