Creatine level

[Ahmad_92]

Hi all,

I am nearly 16 months post transplant, i am always worry about my numbers , my creatine is changing from every time nearly,

Between 1.4 to 1.6 one-time was 1.7,

I noticed that there is a relationship between my numbers and prograf level when prograf is 5-6 i noticed my numbers are 1.5 or less while when higher it is 1.6 or more,

My prograf level in the same dose with fluctuations between 5-8.5.

I wonder if someone is fasing same creatine and prograf fluctuations, also is there a way you stop prograf fluctuations.

My donor is my father he is doing great with also creatine above normal but our transplant team said that great for us and our normal

[ashok5085]

Try extended release tacrolimus after consulting doctor.

[Ahmad_92 in reply to ashok5085]

I am on advagraf the extnded release of tac

[Balap]

tacro level fluctuates based on your diet - mainly fruits and vegetables. medicines like anti-virals, anti-fungals, etc can interact and increase tacro level

[Tolmezzo]

Yes I confirm same pattern. May I ask where you had your transplant? Thanks

[Ahmad_92 in reply to Tolmezzo]

My transplant is done in my country Jordan

[Darlenia]

My hubby's fluctuations are a lot like yours. He'll be 3 years post transplant in June. His creatinine ranges from 1.3 to 1.8. They're usually around 1.7. I've also noticed that the number seems to be linked to dosage levels. And the dosage amounts are undoubtedly linked to rejection potential; my hubby didn't receive a perfectly matched kidney. I've also noticed that some illnesses can play a part in creatinine values. Since my hubby's transplant team is fine with it, we no longer worry about it.

[Blue-Quilter]

I'm 4.5 years post-transplant, and my tacrolimus and creatinine levels varied wildly. At the 3 year mark, I was switched to belatacept infusions because I couldn't get a stable tacrolimus level for love or money! My target range was 7-8 because I had to Dx mycophenolate after only two months due to leukopenia (extremely low WBC). While on tacro, my creatinine was 2.25 to 3.0, which is nearly what it was pre-transplant. (Rather disappointing.) Since switching to the infusions 18 months ago, my creatinine is generally under 2, usually around 1.75. I feel better and have more energy.

My advice would be to listen to your medical team. If they're not worried about your numbers, you shouldn't be either. Your body will settle into its new normal, whether that's in the ideal range or not. I've come to the place where I view each day as a gift from God, and I'm grateful for it. I wouldn't still be alive if I hadn't had my transplant, and since there are many things yet on my Bucket List as well as my Daily To Do list, I'm grateful for the chance to do them. I pray you come to that same place soon, too. Best wishes!

[Ahmad_92 in reply to Blue-Quilter]

Yes i am very grateful for having my gift,and thankful, also as someone diagnosed at my 20s and had my transplant on 30, my life changed for better, my transplant team says this is my normal specially it is very close to my father(donor).For belacept it is not available currently in my country hope will be soon

[JackN]

As others have written some fluctuation is perfect normal. I find that hydration has a slight effect on lowering my creatinine. Your fluctuations seem normal to me. Try to remember to be well hydrated before each test. Best of luck!

[Parkerbarker]

Yes i had same thing happen right after my transplant finally convinced transplant doctor drug was bad for me and turned out it was so got switched to belatacept iv once a month and creatinine dropped and basically zero side effects too

[Ahmad_92 in reply to Parkerbarker]

I hope belacept will be available soon