High Prograf levels

[WishIKnew]

HISTORY:  My transplant was Jan 26 of this year.  After healing for awhile, I was feeling really good, walking 30 minutes a day and building up my health (remember I'm also recovering from a recent battle with breast cancer).  So things were moving along well.  Creatinine down to 1.2, prograf and cellcept levels in range, etc.  Then about three weeks ago I started having urgent, frequent diarrhea (sorry, I know it's gross!).  After several days it progressed into vomiting and low grade fever (100.3 was the highest) and I was sent to the ER at my transplant center.  After 9 hours and a few labs and IV fluids they sent me home.  That was a Monday.  On Friday of that week my transplant coordinator called to tell me they were admitting me because cultures taken in the ER had grown to show a gram negative infection, fusobacterium.  I felt fine except for the diarrhea.  I spent 5 days in the hospital, coming home last Tuesday.  I got lots of antibiotics in the hospital.  They said none of the labs showed the infection any longer.  This week I've felt OK, not great but not bad.  I do have thrush now and am taking Troche.

CURRENT ISSUE:  So, just now the transplant coordinator called to say my profraf levels are scary high - 30 when they should be 8-10.  She wanted to make sure I hadn't taken my meds by mistake before my labs this morning.  I hadn't.  She's talking to the doctor now and will call me back with a plan.  I tried to search this topic on here but everything I found was pretty old and it told me to start a new thread.  So, my friends and knowledgeable kidney people.  What do you think?  What's going on?  What is your experience in this area.  What should I expect?

Diane

[boswife]

wish i could help ya out here but i have no idea.. Hope ya find out soon and that it's a no biggie to take care of.  Wishing you well, and healed!!!   

[justme15]

my prograf levels were 24 at last check, and my docs didn't do anything. I don't think that is right though.  I have had 'the shakes', and strange muscle tremors in my neck and legs. I see my transplant doc on Friday and I will be asking her about this.  It was my regular nephrologist that thought this level was high, but ok.
I'll let you know what I find out!

[mcclane]

wow, 30 !  that is high.

What is your current dose of prograf ?  Is it every 12 hours (give or take) that you take prograf ?

I'm currently on 5 mg of tacrolimus (I believe prograf and tacro are similiar ?)  Did they adjust your prograf dose ?  I know for me, right after my transplant they had me on 7, after discharge it went to 8 then 9, tacro levels went above 10 so they cut it back 1 mg at a time until my current level which is 5.

[jeannea]

First of all, the diarrhea is definitely involved in changing your levels. Prograf only stays steady if you're eating properly and eliminating properly. Bet you weren't eating right when you felt lousy. Next, please ask them to check you for CMV colitis. Better to be sure.

I mentioned this in the other thread but it's too important not to repeat. Have someone watch you carefully for mental changes. If you experience confusion or problems making decisions, call your coordinator right away. You can read online about PRES and you don't want it.

If they're holding your Prograf for a few days it should go back to normal. Are you eating better? If not they'll have to watch the dose carefully for a while.

I'm sorry you're having a tough time. Hang in there.

[jbeany]

Diarrhea is one of the most common symptoms of high levels of tacro.  Chicken and egg here - have to wonder which came first!

My prograf levels (Prograf and tacro are the same thing - one is just the drug name, one is the brand name.) went all over the place when I wasn't eating properly because of my intestinal problems.  Food in your system makes it absorb differently.  Mine dropped like crazy once I went on solid food again.  Sounds like you are having the opposite problem at this point, though.

At that level, the stuff is toxic.  If they aren't holding it or sending you for an immediate recheck, I'd demand to know why!

[BillSharp]

Just some added info. Cedars-Sinai Transplant Center (in LA) advises to take ProGraf 12hrs apart & either on an empty stomach or with food, but not to Do both. I take mine at 8:30 am & pm, and no food for 30 minutes before or after. I'm very conscientious about it, too. My level are always in the 6-7 range.

Sorry for the typos. Just got an iPad and not used to it yet.

[Roxy]

I was on Prograf 4 years ago and even without overly high dosages i had extreme diarrhea and vomiting. This put me in the hospital with an elevated creatinine, dehydration and all my lab values out of sorts. They actually took me off Prograf and put me on Rapamune (which I had issues with later as well) after that. Now, I'm back on Prograf (after going through all the other meds again) and have had the diarrhea for 3mths and now elevated creatinine. I am sure it's the prograf, however the new docs at my transplant center seem to think I'm wrong even though the only time in my 5years with this transplant that I've ever had very bad diarrhea with elevated creatinine and shakes/tremors and everything was when I was on Prograf.
For me, exercise also seems to affect my medication levels. I would agree with everyone else about consistency in food in conjunction with Prograf. 

Hope it all gets sorted out for you and you're feeling better!

[WishIKnew]

They held my dose for 1 time and the cut it back fro 3 twice a day to 2 twice a day.  I still have diarrhea and just feel out of sorts.  I have blood work done again tomorrow.  Thanks for all of you input!  I'm really down, I guess I thought  that after transplant I'd feel better than I do.  I've had about two really good weeks and that was around the beginning of March.  I seem to be much less excited about this "fantastic miracle" than those around me who don't have all the fear and side effects to deal with.  And I certainly can't complain when I should be jumping up and down with joy! I feel guilty and frustrated and about half sick....  I did request an appointment with the transplant psychologist.  It's in two weeks.....

[jeannea]

Don't be so hard on yourself. Transplant is not a cure; it's another treatment. These drugs cause you to live in side effect land. Some people have more trouble adjusting than others. You're doing ok. Your team will help you get through the tough part. Seeing a psychologist is a good idea. But this whole thing is tough mentally as well. Hang in there.

[WishIKnew]

thanks Jeannea... it's all a process.  These drugs cause you to live in side effect land.  Isn't that the truth!  But side effect land is better than dialysis land because even if I don't feel great, I am free!

[KarenInWA]

WishIKnew - I am also on tracrolimus. Currently, I am on 3mg twice/a day. I just got out of the hospital, where during my stay, my tacrolimus (generic for prograff) levels went as high as 24. They d/c'd and the next day I was at 13, then the next day I was at 7 and tacrolimus was resumed. I had a biopsy done last week, in part to make sure I wasn't having nephro-toxicity, and ended up having a rather large hemotoma that had to be surgically removed instead. If you notice a decrease in urine output, please call ASAP!  Mine snuck up on me. One day I was doing great, the next day I was waking up and peeing like a dialysis patient (dribbles). Scary stuff. I am looking forward to a full mend.

KarenInWA

[WishIKnew]

what is d/c'd? discontinued?

Why did they biopsy?  Should I ask for one?

I had lab work done yesterday and my prograf levels dropped from 30 to 17 - still pretty high...  They had dropped me from 3 twice a day to 2 twice a day and they want me to continue at that rate.  I'm just scared....  I never know what is normal and expected...  When I google stuff it just scares me more...

[KarenInWA]

what is d/c'd? discontinued?

Why did they biopsy?  Should I ask for one?

I had lab work done yesterday and my prograf levels dropped from 30 to 17 - still pretty high...  They had dropped me from 3 twice a day to 2 twice a day and they want me to continue at that rate.  I'm just scared....  I never know what is normal and expected...  When I google stuff it just scares me more...

Yes, d/c'd is discontinued. I was off of the prograf until my levels went to just below normal, then it was resumed again. I am currently on 3mg twice/day. Now granted, this all happened while I was in the hospital for a few days.

As for the biopsy, for most transplant clinics, it is protocol to do one sometime after the 3 month mark. They don't always do them. You never want to have a biopsy unless there is a reason for it, because otherwise, it is not worth it. Mine went total text book, then suddenly took a turn for the worse. As a result, I was in the hospital for 5 days and had emergency surgery. Do not bring it up unless they do!!! The reason for my biopsy was to check for possible rejection (none) or prograff toxicity. My creatinine went as low as 1.45, but settled on 1.7 after completing my 3-month-long clotrimazole 4 x day regimen to prevent thrush. That med is known to raise prograf levels, so once I went off of that, then my dosage had to increase, which then increased my creatinine. Annoying beyond belief. Then go in to have a bioipsy, and end up with creatinine from hell a few days later...

KarenInWA
KarenInWA

[Marina]

This  is  a  vicious  circle.

Although I  had  no  idea  high  Prograf/Tacro  levels  would  cause  diarrhea.

Diarrhea  causes  dehydration. 
Dehydration  and  antibiotics  (especially  IV  antibiotics)  will   increase  prograf  levels  as  well  creatinine  levels.    High    prograf  levels  will  cause  diarrhea.


Some hospitals   (UCSF  being  one)   do  a  routine  kidney  biopsy  at  the  6month post TX  mark.         

[jeannea]

I think a routine biopsy is a terrible idea. There is so much risk of harming something that is going well. My center doesn't biopsy unless there are signs of rejection.

WishIKnew, 17 is still a little high but better. Upper limit is usually 15. You're getting close to normal. Don't ask for a biopsy. Just keep up with your blood tests and tell them if you're still having trouble eating or with diarrhea. They'll help you if you ask for help. You're going to get through this.

[Southpaw]

I was on Prograf for many years after my liver transplant. Had tremors in my hands for a long time but my body got used to it.  Prograf is nephrotoxic, so when my kidneys started to get worse they switched my to sirolimus.  A newer immunosuppresant and not nephrotoxic. I would think  your doctor might bring your dosage down a little and eventually your body will get used to the prograf.

[Chris]

When my FK506/ Prograf/Tacro (all the same thing for labs is high, Iam told to get labs repeated ASAP before they do anything at my clinic just to make sure it wasn't a lab error. But when it's high the center does look at other causes and ether decreases dose or stops the dose for a day or two after checkng labs.
 
Unfortunately this is just one of those small bumps in the road we go thru. You'll be ok.

[paris]

Several wise people here told me a couple of years ago, that I would feel better after transplant, but after a year I would really notice that I was much better.  There seems to be many little bumps along the way, but after 1 year I realized things had smoothed out and I felt more like the old me.   Now at 19 months, I can feel a bigger difference and labs and meds are all good.   I hope this gets resolved very quickly and you can keep working on recovering.  It is a slow process but slowly you'll feel better and better.     Keeping you in my thoughts.

[WishIKnew]

Now they are worried because the Prograf is down to 3.5.  They called to make sure I'm taking them correctly.  I am doing exactly what they said, but I feel so stupid when they question me.  "How many are you taking?"  2 twice a day as you told me to.  "What color is the pill?"  small white capsule with red printing ...   Anyway, I know it's all a balancing act...

I'm cranky because they found a 6 cm "cyst" on my ovary last week which I have an ultra sound and blood work on Monday to get more info about.  They are trying to rule out ovarian cancer.  Good God!  Really!   Then they will decide if the cyst can be left alone or if it needs to be removed.  NO MORE SURGERY.  It would be my 11th since last June.    

Then Tuesday I have my three month check up with my oncologist from my breast cancer.  I have several concerns, mainly the skin between where my breasts used to be has changed.  It's thicker, bumpier, and more tender to the touch.     I also need to talk to him about side effects from my chemo medication.

Then Friday I have my monthly appointment with my transplant coordinator and nephrologist.  Hoping to get the Prograf settled and I'm freaking over the weight gain!  Right after that I finally meet with the psychologist I requested a month ago.  Do you think I need one!   I think when he's done with me he's either going to admit me (that's sort of a joke and sort of a real worry) or go running from the room screaming!

So, thanks for giving me a place to share my week ahead and my worries.  This probably should have been a new topic but I don't know how to change that now...

[jeannea]

An 11th surgery would make me cry. I don't think the psychologist will admit you. I'm glad you're going to talk to him/her though.

[cassandra]

that psychologist-visit will make you feel better, just because you can talk. and talking about your worries, and will help. Good luck WishIknew. You sound like a strong women to me. Don't feel stupid, because they talk to you as if you are an idiot. That's just to cover their backs, so even a donkey can understand their questions, so you can't say you couldn't understand them or something.

Lots of strength, and love Cas

[C904]

Now they are worried because the Prograf is down to 3.5.  They called to make sure I'm taking them correctly.  I am doing exactly what they said, but I feel so stupid when they question me.  "How many are you taking?"  2 twice a day as you told me to.  "What color is the pill?"  small white capsule with red printing ...   Anyway, I know it's all a balancing act...

I had a similar issue with Prograf and my levels jumping all over the place.  Were your intestinal problems gone when you did this test?  Were you eating somewhat normal before this test?  Going with the assumption that you had those huge levels earlier on the thread because of the intestinal problems and maybe not eating as much as you usually do.

When I was having intestinal problems my Prograf shot up and they kept decreasing Prograf more and more and more.  I was at 4mg morning and 4mg at night before the problems.  I am now at 3.5mg for the whole day.  My Prograf problems during that period was tied to the intestinal problems, but the overriding factor was my food consumption with taking the Prograf.  Since the transplant I took the Prograf with food, but during my intestinal problems I obviously did not eat as much and especially at night.  This caused the Prograf to skyrocket and multiple tests to get the level in line.  After talking with the doc and trying to put the pieces of the puzzle together we discovered that if I take the Prograf on a empty stomach at night that the amount of pills could be cut by more than 50%.  Keep in mind I still take my morning Prograf with food, so for some people you can see how much having food in your stomach can swing levels.

For some people the amount of food or type of food they eat or even if it is on a empty or full stomach can cause huge swings in the Prograf level.  First doc I met after transplant told me a story about a guy who had huge fluctuations several times during the week with his level.   They could not figure it out for a long time and when they did it was because on certain days he would have fast food for breakfast instead of his normal breakfast.  The fast food was just a little bit of carbs and garbage preservatives and on other days he had a full breakfast at home.  The doc told me the moral of the story is not that you have to eat the same type of food everyday, but try and avoid days where you may be in a hurry and you are just grabbing a little something or skipping meals. 

I have no clue if any of this applies to you, but I remember going through all this same Prograf stuff for awhile last year and it gets to be a pain when you can't figure it out.  I also remember getting those same questions, "Do you know the .5mg is a different color?" or "Did you remember we changed your amount earlier in the week?"

You have a lot on your plate with all the other stuff that hopefully they can get this Prograf straightened out.  Good luck to you.

[Chris]

Your not eating or drinking grapefruit/ grapefruit juice by  chance are you?

[C904]

I made a mistake in the post above Chris's post in that I tried including part of what WishIKnew I had posted.  It came out looking that WishIKnew had posted all of my answer.  I am clueless as how to fix.   

Sorry for any confusion.