High Prograf levels

[brandywine]

wishiknew,
So sorry to hear about your situation. Didn't you have an older donor like me? Mine was 68. Tomorrow I will be 2 weeks post tx.
I have had diarrhea for several days now, along with headaches, tremors, burning hands and feet (especially when covered, like with socks). I know that all of these have to be side effects from the prograf, because I felt fine until I started taking that, and then still okay mostly until my levels went up to 10.
I have to tell you that on Friday, I was up to 12.5 and my doctor was freaking out. I thought that was in the normal range, but he told me to skip my dose that night, because I had already taken my morning dose at the higher amount before I found out. My creatinine went from 1.3 to 1.5. to 1.6 to 1.7 in 4 days. They can't find anything else wrong with me, so the doctor believes it's from the Prograf. I will get another ultrasound (my third) and a biopsy this week.
Last Saturday, I had a fever of 101.2, diarrhea, severe headaches, and I went to the ER. They admitted me to the hospital but couldn't find anything wrong. Fever went down in just a few hours, but the next morning, my creatinine had gone from 1.3 to 1.5. It went back down by the next day, but I can't help think that all of that was caused by the PRograf.
I'm really starting to worry that if my body doesn't react well with it, that I might be in trouble.
Like you, the side effects are so bad that I'm not able to enjoy my transplant yet.

[WishIKnew]

Oh Brandywine, hang in there.  It took awhile for them to get my meds to a point where I can handle the side effects, but we did get there!  All the bumps in the road at the beginning are so "normal" except we, the new transplant recipients, have no idea what normal is and it can be terrifying.  I was really freaked out a lot for the first couple of months and really didn't feel very good while everyone else was jumping for joy because they were so happy for me.  Honestly, it was a little annoying.  But I'll tell you, I'm 4 months out now and the meds are settled and things get better every day.  Hang in there brandywine, ride the waves as best you can and eventually it will be smooth sailing!

Thinking of you!

 

[DialysisGoneFOREVER]

The scary thing is they check your trough when checking your Prograg level which is the MINIMUM! So if your minimum is 17, 20,  or 30 then how high is your maximum??

Does anyone know how long your prograf trough levels need to be 20 or higher before permanent damage is done?

[frankswife]

Something similar happened to my husband. (Transplanted 7/22). About a month after transplant, he collapsed in the hospital parking garage after Clinic. Turned out his Prograf level was 26. They reduced him to 2 capsules in am and one in pm and hes been good since.

[DialysisGoneFOREVER]

Something similar happened to my husband. (Transplanted 7/22). About a month after transplant, he collapsed in the hospital parking garage after Clinic. Turned out his Prograf level was 26. They reduced him to 2 capsules in am and one in pm and hes been good since.

Wow! How long was his prograf level at 26? Did he suffer any permanent damage to the kidney? When you say his prograf level was at 26 you mean his trough level right? They test for the trough which is the MINIMUM!!

[frankswife]

Dialysisgoneforever,
It was the strangest thing. We were leaving his weekly clinic when it happened. He had just had blood work 2 hours before and his level was ok. They first thought lab error when they saw his tacro level when he came back through the ER. It was 26 so they admitted him. It went to 15 that night, 9 the next day, and so on til normal a day or 2 later. It was definitely weird. Not sure what "trough level" in answer to your question.

[DialysisGoneFOREVER]

Dialysisgoneforever,
It was the strangest thing. We were leaving his weekly clinic when it happened. He had just had blood work 2 hours before and his level was ok. They first thought lab error when they saw his tacro level when he came back through the ER. It was 26 so they admitted him. It went to 15 that night, 9 the next day, and so on til normal a day or 2 later. It was definitely weird. Not sure what "trough level" in answer to your question.

The trough is the minimum point on a curve. It's supposed to be taken at about the 10 hour point if you take prograf or 22 hour point if you take Astragaf. The scary thing is how high can the MAXIMUM be 2 or 3 hours after you take prograf? 

[MooseMom]

I know it can be as high as 45 30 minutes after taking tacrolimus.  One month I accidentally took it BEFORE my blood draw, so instead of the lab result showing the trough, it showed the "apex".  I told the phlebotomist about my blunder and asked that she note it, but sure enough the next day I got a call from my coordinator who had correctly assumed that I had taken it too early.  She was the one who told me it was 45.  I had never realized it could go that high!

[DialysisGoneFOREVER]

WOW!!?! 45 for a prograf level!! That didn't do any permanent damage to your kidney?

[Chris]

WOW!!?! 45 for a prograf level!! That didn't do any permanent damage to your kidney?

That was because she took her dose 30 minutes before lab draw. As time goes by the level goes lower and lower. This is why Prograf or other meds have to be taken every 12 or so hours apart before it is completely depleted. This is where the trough level comes in, they want to see what the level is within the 12 hour (for Prograf) point. If to high, lower levels, if to low, more is taken

[DialysisGoneFOREVER]

I know that but would a level of 45 damage the kidney even if the level was that high for just for a few hours?

[MooseMom]

I know that but would a level of 45 damage the kidney even if the level was that high for just for a few hours?

Well, I've had my kidney for almost 4 years with no sign of damage yet, but we all know that these drugs are nephrotoxic and that it is a matter of walking that thin line.  But it is the best we have at the moment.  I would imagine that drug companies are trying to find a workable and less dangerous alternative; if they did, they'd make a bloody fortune, hence the incentive!

[DialysisGoneFOREVER]

That's great Moose Mom! How long was your prograf level at 45?