Prograf toxicity? How high is too high and for how long?

[DialysisGoneFOREVER]

I got my living donor transplant 11 days ago!   

You guys know how long your prograf level needs to be high before damage is done? How high is too high?  My level came back at 16 and it was that high for 4 to 5 days. Of course they lowered my dose.

Thanks so much for all your help!!   

[Deanne]

A toxic value is over 25, according to the data that comes with my regular lab reports. If you'd had a heart transplant, your goal would be 10 - 20 for three months.

My neph suspected prograf toxicity for me for a while and my level was low. Some people just can't use it, I guess. She thought so because of neurological symptoms I was having, but in the end, the symptoms gradually went away after my issues with hypercalcemia were fixed. My point is to watch for symptoms maybe more than the actual number when you thing toxicity might be a problem.

Congratulations on your transplant! Are you doing well?

[DialysisGoneFOREVER]

Thanks Deanne!!  I was reading toxicity can be a very individual thing depending on the patient. It probably true a level is 25 is toxic for most patients but for others it could be a lot lower.

What are the major symptoms of prograf toxicity please? I'm sure there are symptoms that have nothing to do with the kidney too

[MooseMom]

I believe that in the first year or so post renal tx, most centers want your tac trough at around 8-10, and as time goes on, they will want to see it between 5 and 7.  That's how it was for me, but things may be different for you.

Remember, this is a measurement of your tac trough, ie, the minimum.  One month I accidentally took my tac BEFORE my blood draw, and my lab came back with a reading of 45!  So, that meant that on a single day, one could reasonably assume that my tac level went from 45 to 5, then back up to 45, back down to 5 and so on and so on.

[DialysisGoneFOREVER]

WOW!! For how many days was your Prograf level at 45?? Did it permanently damage your kidney?

[Deanne]

I had a lot of neurological symptoms due to hypercalcemia. A month or so after surgery to remove three of my parathyroids, my neph was worried because my tremors were so bad that it was difficult to even talk.

Do a web search for prograf toxicity though and you'll see the others.

[MooseMom]

WOW!! For how many days was your Prograf level at 45?? Did it permanently damage your kidney?

Well, every day.  My point is that right after you take your dose (or at least within 30 minutes), your tac level will be greatly elevated but will decrease during the next 12 hours, after which it should ideally be in the range set by your tx center.  Then you take your next dose 12 hours later, and within 30 minutes your tac will be elevated and will then decrease to that ideal range, and then it goes on and on after that.

This is why tac toxicity can be a problem.  Everyone focuses on the tac TROUGH (the minimal amount of the drug in your blood 12 hours after your dose) because they want to make sure there is enough in your blood to stave off rejection.  But no one seems to measure the amount in your blood just AFTER you've taken it.  I found out by accident because I'd made a silly mistake.

[DialysisGoneFOREVER]

You know if Astragraf is any better? I'm hoping it might be because it is once a day and timed released unlike Prograf. I've been on that for 2 weeks since I got the transplant and I've been doing well on it.

[MooseMom]

I don't know anything, really, about extended release tacrolimus.  I've read a few brief publications about the results of conversions from twice a day dosage to the extended release dose, the conclusions being that they 'seemed safe", but since you seem to have been started on the Astagraf from the beginning, you have an advantage.  Sorry, I really don't know, but I may ask my tx neph about it the next time I see her.  I wish our tx teams would inform us better about new treatments that are coming on the market.  But I guess they feel that if it ain't broke, don't fix it.