Transplant anti-rejection medications. What's your advice?

@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

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..

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 .

So, if and when a transplant patient does get neuropathy, is it a permanent, progressive illness? Or does it abate or perhaps even go away once one may be weaned off the drug that caused it at some point? My mother never took any of the drugs you mentioned as she never received a transplant. Her neuropathy was caused by diabetes and she eventually ended up in a wheelchair due to no feeling in her feet. Is that the future with neuropathy as a side effect of an immunosuppressant drug that a transplant patient has to take for a lifetime?

@athenalee No side effects that I am aware of. I do have achy legs at times, in fact a lot, and I have heard that sirolimus can cause that but I'm not sure that is what it is from. They were not a problem until I started walking on pavement during the pandemic. Prior to that I was going to my health club and either using a treadmill or the impact-absorbing track, so I am doubting the pains are a result of sirolimus. I haven't been walking on pavement for a few months now though and they are still a bit achy.

Other than that, no side effects.
JK

So, if and when a transplant patient does get neuropathy, is it a permanent, progressive illness? Or does it abate or perhaps even go away once one may be weaned off the drug that caused it at some point? My mother never took any of the drugs you mentioned as she never received a transplant. Her neuropathy was caused by diabetes and she eventually ended up in a wheelchair due to no feeling in her feet. Is that the future with neuropathy as a side effect of an immunosuppressant drug that a transplant patient has to take for a lifetime?

I do not fast before my meds.
-I usually am awake 6 am. and will eat breakfast 7-8 (?). Take meds at 8;00 AM
-Dinner is 5 Take meds at 8:00 PM
My husband and I are retired, and so we have a flexible schedule. The only constant MUST is my med schedule.

Has your doctor/pharmacist told you that you must fast before your meds?

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 ?

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..

@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?