timing immunosuppressants

@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, 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.

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?

@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.

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.

@rosemarya I know you know me, but others may not, and I would not want anyone to think it was a good idea to just modify medications without checking first, so the transplant team could have lab work done to see the effect of the changes.

You probably are very consistent with how you take yours, so it's not as if that changes for you. I am not as consistent in my overall schedule. Some mornings I sleep late, and we often have dinner late. 8:00 or 8:30 worked out well for me. That allowed me to take my medications before going to my water classes, but I wanted this change. Crazy, huh? They really did not make much of this at MGH either, but I read it in the information they give you with the prescription.

I get my immunosuppressants through a CVS specialty pharmacy in Boston, they send them to the CVS up here. They used to send them to my home but then I had them send them to the CVS so I would not have to be here to sign for them. This works out much better.
Of course CVS does not monitor anything, that's up to my transplant team. They do it by the lab work, they do not ask me regularly at all. There is basically a one hour window around the usual time I was told because with my taking them so early in the day, on the days I have to go for lab work I end up taking them at around 7:30 rather than 6:30 - the lab opens at 7:00. Thankfully it's a Quest lab, a national company, and it's only a few miles down the road. I bring my pills with me and take them as soon as my blood is taken.

I had a Fitbit Versa fitness tracker that was perfect for me from the standpoint of having an alarm that vibrated on my wrist. That way I didn't wake my husband. Unfortunately it was not perfect in tracking activity so I sent it back. I plan to get an Apple series 4 when they come out next month so I hope their vibration will be as strong. It really helps. There are also vibrating alarm clocks that you can put under your pillow. My daughter gave me one of those but it didn't work for long. She has one and it has worked well for quite a long time. We have them because we both have hearing disabilities so the alarm clock wakes my husband long before it wakes me, he usually ends up waking me when I use it
JK

Which meds have been readjusted? Thyroid or anti rejection?

@jodeej That is a concern. I was originally taking mine at around 9:00 but I was in the pool at that point so I would have to stop what I was doing and take them then. That was a nuisance, so I moved it up to 8:30, and then to 8:00. He could probably take them just before he leaves for work, or if he wants to take them without food, maybe as soon as he gets up, before he starts getting ready for work.
With tac of course it has to fit in two times, 12 hours apart, a day. With sirolimus it's only once a day. Interestingly, if you read up on sirolimus it says not for liver transplants but I have to trust my transplant team, I am sure they know what they are doing. It's certainly better than having my creatinine get high, possibly affecting my kidneys.
As they say though, it does need to be consistent. I have no idea if maybe you could do the morning without food and the evening with, or vice versa, but your transplant would have the best info on that.
JK

@coquifoife Congratulations on being 20 years post-transplant. That's fabulous.

Perhaps you are taking your pills close enough to eating so that it is within the window. If not, you are just lucky I guess.
JK

I'm glad that you posted, I had thought about it earlier but got busy doing something else...you should never change your medication, especially your anti-rejection meds., without first speaking to your team and I'll give you a for instance. I had a real high reading on my tacrolimus level was very high after somewhat lower levels and it was a false reading and turned out to be closer to normal.