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

@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.

Thank you for posting this. I am a kidney transplant recipient (7 months ago) and I started experiencing serious and worrysome hair loss less than a month ago. I have been told by transplant team there is not much to do besides over the counter remedies.

First of all, the medications and dosages I take may not be right for you or anyone else.
I am 77 years old, had a heart transplant at Banner University in Tucson, AZ in 2003 (21 years ago) and am doing very well for my age. After transplant I was taking a number of meds(and dosages) in accordance with the protocol established by the transplant center. Included in the meds was tacrolimus and mycophenolate, in dosages that were very different from what I am taking today. At the time, tacrolimus was categorized as experimental for adult heart transplants. These meds have been very successful in my post transplant treatment. I have never had an issue taking these meds. I hope this gives you some guidance about transplant meds.

I not sure my reply went thru. I hadn't finished when it disappeared. I'll check tomorrow. Oh well lol