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timing immunosuppressants

Transplants | Last Active: Aug 26, 2018 | Replies (22)

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@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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Replies to "@contentandwell we never thought about this! We will have to try this for a few weeks..."

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

@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.

@coquifoife , I have seen photos of the dogwoods in Ga. Beautiful!! I'm in Kentucky, and our garden club sponsored dogwood tree planting as a city beautification project some years ago. So I get to enjoy a small taste of the beauty here at home:-)

Thank you for sharing your encouraging 20 year success. What organ did you receive in y our transplant?