What is your average tacrolimus level? Hoping to reduce side effects

I am a double lung tx recipient and have been told by my team that they want to keep your levels within a certain range. Although I am 2 1/2 years out, they raised my level of tacrolimus that I am taking. It all depends on how your body is reacting.

@s7r3welty, Welcome to Mayo Clinic Connect! You are attracting quit a group - you with a heart transplant, @chickytina with a double lung transplant, and now me with a liver and kidney transplant! Tacrolimus dosage individual to each patient. It might go up, down, remain at the same level or, in some cases swithched to a different immunosuppressant medication. I have been on Tacrolimus for the entire 16 years since my transplant at Mayo in Rochester. It works well for me and my transplant team keeps an eye on the trough level - and - my routine blood labs to determine if a change is dosage is necessary based on what is best for my transplanted organs.
On a few occassions, my side effects caused me to contact my post transplant nurse about them. And sometimes after consulting with the doctors, she had me lower dose by 0.5 mg of my daily dose. Of course that was always followed with a repeat lab in 2 weeks (sometimes repeat labs).
As for the trough level, it is a range and even it can be adjusted over time.

What kind of side effects are you bothered with? Have you asked your transplant team about managing them whiloe on the current tacrolimus dose? How aften do you see your transplant team or have labs and tacrolimus level measured?

My body is not reacting well to the new dose of tacrolimus. My Doctors do the opposite of what they say and disregard anything i have to say about my reaction to tacrolimus.

Itching that can't be control all the time. Talked with dermatologist and my primary Dr. and have done everything they suggested. Headaches the primary Dr. has control with meds.. Muscle aches, stiff and sore joints. Could control with medicine. Just feel if I need to take this much medicine I need to try something else besides tacrolimus. Did I mentioned it all goes away if I drop back to the original dose I started out on.
I have seen and talked with my transplant team recently . Plus blood samples every 2-3 wèeks.

My skin is also very dry and itchy, but I would rather have dry itchy skin then have rejection. I have discussed this with my doctors and will bring it back up with them again this month. However, you need to be your own advocate. If you don't think they are listening to you, tell them you don't feel heard and/or find another doctor.

Thanks for your comments. Dermatologist says there is nothing wrong with my skin. ( it's not dry, no rash ) Just very sensitive to the touch. It's hard to talk to my transplant doctors. I just about given up communicating with them. I have been trying to find a different transplant team to take over my care. No luck yet.

@s7r3welty, I just had a thought - I wonder if you might present your doctor(s) with a daily record of the side effects that you are experiencing (dates/times) as well as the treatment involved. There might be a pattern that will provide a hint as to what is going on. Also include the time of any medications (prescribed and over counter) that you take.
-just thimking out loud.

I am 1 1/2 years heart transplant. My trough level target is now 7 I am F 130 lbs.

Thanks for your reply. 7 sounds just about right for maintenance level from what I have read. 9.6 is at the level they had me at the first nine months. Then switched me cyclosporine because I was having all kinds of side effects. They just took me off cyclosporine because of headaches we couldn't control and put me back on tacrolimus plus double my dose of myfortic plus added 5mg of prednisone which I haven't taken since 6 months out from transplant. They just got me between a rock and a hard place.
Which doesn't make sense. Since I couldn't tolerate it the first time.

I want to introduce this blog article from the Transplant Pages. It contains some excellent information about our post transplant medications and how they affect us.
- Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
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I like this article because it is written in a patient friendly format! After reading the full article, what did you learn that will help you as you discuss your side effects with your care team?