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

This is interesting. My labs are done at a local lab and I never have been asked when I took my envarsus xr last though it's always 8 am the day prior. Great information. Thank you for this suggestion.

You are so right! I live on a peninsula in. The UP with a very small health center (part of their larger system 125 miles away) and the phlebotomist(s) are quite unfamiliar with transplant/immunosuppressant folks (only one remembers me after being up here 10 years) and unless I specially tell them to mark down when my last dose of Sirolimus was before the draw, it gets sent to Mayo, Rochester without letting them know when and how much my last dose was. Very frustrating. So right, while. I used to get my hackles up when one of the Transplant Team nurses would question me as to when & how much I'm taking of one of my meds...but then I'm like "hey Mayo folks are smart but not clairvoyant, and if the date/time isn't clearly stipulated on the accompanied paperwork (which their mail-in kits clearly instructs), how would they know.
Thanks for your comments and sending best wishes for you.
(PS...just got home from Gift of Life last night where we stay while at Mayo...love that place!)

I have had 2 liver transplants, one 2000 and the other in 2017. The whole time I took Prograf/Tacrolimus except for a trial month on sirolius. I was allergic to it so I went back to Tacrolimus. My levels were higher in the beginning now I have cut back. My levels were higher years ago but much lower now. My tests typically are a little below or on the lowest numbers in the normal range. I have never had an organ rejection over 24 years however, my current doctor team thinks the Tac may be the reason for my kidney damage and pheriferial neuropathy in my feet and ankles. My advise is to try and get your Tac levels around the low normal area. But, some people have organ rejection and need higher doses. Talk to your doctor about possible side affects of your medication and Google these things so you can talk about things intelligently with the medical staff.

@charlie5454 I so relate to your post. Another thing I discovered in the process of post transplant lab level draws is that the phlebotomist is sometimes unfamiliar with the test & / or is following protocol by rote instruction. They don’t always ask the date and time of the last dose of immune suppressant. Who knows what or if anything is recorded? That can make the level seem falsely high or low! I make a point of telling them the date and time and ask them to make sure to record it. Later if the level seems wonky, that is one reason that can be ruled out.

Thank you for writing. That is a great suggestion. I will contact my supplier. Still monitoring weekly but I have my annual 4 yr anniversary checkup next week at Jax Mayo and hope we straighten it out. I'm a bit scared as I feel more light headed and foggy thinking and blurry eyes. Hopefully I'll get some answers next week.

I agree and even after many years taking an immunosuppressant, suddenly your lab numbers are off. I am 19 1/2 years post kidney transplant and have been on Sirolimus since day one but still, after some labs, my level is suddenly too high or in the low range, prompting the transplant dept. nurses to ask if I'm forgetting to take it on time or did I not wait 24 hrs. after last dose for the lab draw. So, even after these many years, some months they have me take 2 mg., then maybe 1mg., then maybe 2mg., alternating with 1mg.
Same with Cellcept. Taking it since day one, initially 500mg. twice daily, then tapered to 250mg. twice daily. No issues until about a year ago when I developed bad gut issues. Now on Mycophenylate 180mg. twice daily with no issues.
Anyway, used to frustrate me...as if this is my fault when I'm questioned if I'm taking my meds properly. But then I figure, they're just probably following protocol by asking the questions in order to rule out patient error or misunderstanding. And, beats dialysis or worse any day!

Hi, @skjones. When I read your message of June 28, you were having concerns about your rising and lowering tacrolimus levels. And, I will add that I can understand because I do the same thing whenever anything is not "my normal" in any of my labs. I have recently remembered a conversation on Connect where members shared that they had noticed a change in tacrolimus levels when the pharmacy switched to a different supplier. I also remembered that I had received a notice, once from the Mayo Specialty Pharmacy (where I get my medications) when they switched. I don't recall that my level was affected for that, but it might be comething for you to consider.

Is it possible for you to contact your pharmacy and check your prescription/manufacturer history?
How are you feeling? Have you, or will you be seeing your nephrologist soon?

All meds have side effects including immune suppressants/ anti rejection meds. I am 19 years post pancreas transplant. I had issues with Mycophenolate but no problems with Tacrolimus. I also had Sirolimus and Azithioprine sp? for awhile. If you are having intolerable problems with you meds ask for help from your transplant team (and be grateful for your transplant)!

I am 5 months post liver transplant and my hair was falling out in clumps leaving major bald spots I went to my dermatologist who recommended using K18 shampoo and conditioner (bought on Amazon) and vegamour hair oil twice a day my hair is still coming out but not as bad and I am beginning to see hair growth in the bald areas. Hope it helps

I was loosing my hair before the transplant and meds. It did not get worse with tacro.