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JK, Volunteer Mentor
@contentandwell

Posts: 1943
Joined: Feb 18, 2017

timing immunosuppressants

Posted by @contentandwell, Sat, Aug 25 1:43pm

I know many of you are post-transplant as I am. They tell you to take the immunosuppressants either with or without food, but to be consistent. I suddenly realized a couple of months ago that if I took them without food I could probably take fewer pills so I tried that, and I was right — I went from four pills in the morning to 2.5. These medications are never great for you, long-term, so I like the idea of taking a smaller dosage.
The problem is timing it so that I am not taking it with food. At this point I try to take them about an hour before I get up, giving me about an hour and 15 minutes between taking the pills and eating. I was wondering, how are other people managing that? It can be a real nuisance to take them an hour before I want to get up because often then, I cannot get back to sleep and end up tired.
JK

REPLY

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

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Is this advice from your dr.?

Yikes! That sounds complicated.
I am fortunate that I don't have any that are restricted to before or after eating. My 2 immumosuppressants are to be taken 12 hours apart and for me, 8AM (includes some other meds) and 8PM work well. However I do have a few that are part on my bedtime routine.
My labs are drawn every 3 months, and my tacrolimus level is also checked at this time. My dosage had to be adjusted during the first couple of years after my transplant, but has been stable for the last 4 -5 years.

Knowing that we all have different medications for our transplants, as well as for other conditions, this is a hard one to comment on. Have you discussed this with the doctor?

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

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@jodeej, Please don't do any adjusting of meds. Your husband's transplant team is the only one to do this. If you have any questions talk to them.
From personal experience, my immunosuppressant levels were adjusted frequently in the early months and years of my transplant. Now, 9 years post transplant, I have labs every 3 months, and the tacrolimus (prograf) level is carefully monitored.

Liked by jodeej, coquifoife

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

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@jodeej I can’t believe how long I went without this occurring to me. I believe the least amount of any drug we can take is best, there are definite long term effects to all of them. It was easier and more convenient to take them with food but I feel good that I can now take a lower dose.
JK

Liked by jodeej

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

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@dogwood928 I cleared it with my doctor and they put me back on weekly monitoring for a few weeks.
JK

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

Jump to this post

@jodeej @rosemarya absolutely never make changes without checking with your doctor.
Rosemary, do you take your tacrolimus with, or without food? If without, how do you time it?
JK

@rosemarya

Yikes! That sounds complicated.
I am fortunate that I don't have any that are restricted to before or after eating. My 2 immumosuppressants are to be taken 12 hours apart and for me, 8AM (includes some other meds) and 8PM work well. However I do have a few that are part on my bedtime routine.
My labs are drawn every 3 months, and my tacrolimus level is also checked at this time. My dosage had to be adjusted during the first couple of years after my transplant, but has been stable for the last 4 -5 years.

Knowing that we all have different medications for our transplants, as well as for other conditions, this is a hard one to comment on. Have you discussed this with the doctor?

Jump to this post

@rosemary of course I checked with my doctor, I would never make a change without checking. That is how I knew the change worked in allowing me to reduce my dose, they had me go for weekly lab work for a few weeks after I changed, and they then reduced my dose first to 3 tablets, down from four, and then to 2.5.

Actually tacrolimus is the same – take it consistently, either with or without food.
From one of the drug sites, re. tacrolimus:
Comments:
-Should be taken consistently either with or without food because the presence and composition of food decreases the bioavailability.
JK

I just want to clarify one thing. I should have said in my original posting that I first spoke to my transplant team and told them I would like to start taking them without food. They then checked me, and sure enough my level was higher than need be so they cut me back, two times.

I would never, ever change an important medication like that without checking with my doctor and I would never suggest that anyone should. I tend to be a very cautious person and those who know me, know that about me, but of course my online correspondents do not. I am very much a researcher also. Many people who know me, think I should have had a job that entailed research. Researching was probably what led me to realize that I would be better off taking the medication without food so I could take a lower dose of it. All medications have side-effects so the lowest dose you can take of anything, the better off you are, I believe, but again lowering any dose should only be done after consultation with your doctor. I was able to lower my dose of levothyroxine also, after consulting with my doctor. I had a feeling that my thyroid did not need the dose I was taking and sure enough I was right on that too, and my pill is now cut in half. I was already at the lowest dose pill available. Hopefully this week when I see my endocrinologist I will be able to continue at that low dose, or perhaps stop taking it entirely.
JK

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

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@rosemarya I wouldn't adjust the dosage, just maybe when Tim eats in regards to when he takes his meds.

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

Jump to this post

@contentandwell, You have brought up an interesting perspective. And, I know that you would have consulted with your doctor because I have come to know that you are a very dedicated transplant patient! I didn't mean to imply otherwise; my intention was to stress to any readers the importance of consulting with medical team before any changes.

I take my tacrolimus and my cellcept at 12 hour intervals. I have already eaten breakfast before my 8 AM dose, and also have had my dinner before my 8 PM dose. I have to confess that I don't remember what I was told about "with or without" food. All that I can remember for certain is that at some point early in my post transplant period, my team said to continue to do what I am doing. So that is what has worked for me for 9+ years.

I have several purse/pocket pill containers and I always take a does with me if I am going to be away for the day.

Here is something else –
I get my anti rejection meds thru the Mayo Specialty Pharmacy, and they will do a periodic survey to monitor my compliance to taking my immunosuppressants. One question I always get is, "How many times in the past (time period) have you been either 2 hours late or early with your immunosuppressant medicines?"

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

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@jodeej, Whatever is decided. My tip is to make it something that fits his lifestyle. Remember that he will be on antirejetion meds for rest of his life.
This would be something good to ask at the 4 month checkup.

Liked by jodeej

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

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Hi, @dogwood928, Welcome to the Transplant Group. I don't think that I have met you before. (forgive me if I am incorrect).
I received a combined liver and kidney transplant in 2009 at Mayo Rochester. I absolutely love your online name – it reminds me of the beautiful dogwood trees that bloom in my home state in the springtime !
Are you a transplant recipient, or a caregiver?

Liked by coquifoife

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

Jump to this post

@rosemarya we've talked to them about possibly needing to adjust the timing of taking his meds. Here will have to be to work by 7:00 a.m.when he returns, so we need to decide what will be the best time for him to take them. My concern is that if he's busy at work at 8:00 that he won't stop what he is doing to take them and then forget.

@jodeej

@contentandwell we never thought about this! We will have to try this for a few weeks and see if there are any changes. Thank you for posting!
Blessings,
JoDee

Jump to this post

I live in Georgia-Home to the dogwoods. I’m 20 years post-transplant at Emory. I get labs every 6 months. I set my alarm for 9:00 am and 9:00 pm for meds. Sometimes with food, sometimes not. Doesn’t seem to make a difference. I’ve never had a problem.

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