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

Saundrella, I'm jumping in to say that I have been taking immunosuppressant drugs since 2009 for my transplant, and no signs of neuropathy. We each come to transplant with different health issues, and there is not a simple standard response as to how anyone of us will react. We do have routine labs drawn to measure the level of the drugs to maintain our necessary dose. And that, too, is an individual number that is specific to us.

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 .

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 .

@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?

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. 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 ?

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?

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?