For some reason after being stable for quite awhile now my Prograf levels have been causing troubles here lately. I was always one of those who had to take a fairly large amount of Prograf to get my levels to where they need to be. Well that was then I guess!! I had gone into the hospital for a couple days right after Christmas for what they seemed to think was a 24 hour bug or something. About a week after I had regular labs my Creatnin was up and when we got the Prograf levels next day we found out why it was up to 23 and it was supposed to be around 8-11 at this point. My coordinator and I thought that maybe I was given too much Prograf in the hospital. I was on 7/7 then so they had me hold my Prograf that morning and then reduced it to 5/5. I had labs done a few days later and it was back around 10 so I stayed on that dose. A week after the initial labs I was tested again and this time it was back up to 13, okay that's weird we all thought so again they lowered my dose to 4/4. My next level was back up to 20!! At this point we are trying to figure out anything that it could be. There are no new meds, nothing has changed in my diet it's kind of mind boggling!! So they lowered me to 2/2 and I just had labs yesterday and I am back in range!! What a time it has been! We are just going to leave things the same and recheck everything with full labs on February 2. Talk about an ordeal!! My coordinator is kind of worried about lowering it so much it's such a balancing act and I've never really had problems with it like this before. I am about 18 months out from my transplant. I am hoping this sets things straight for awhile keeping my fingers crossed that's for sure!!

If any of you have had similar experiences please let me know I'd be interested to hear anything you have to share!! Otherwise things are going great and I am definitely thankful for that!!

:-)Heather

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Comment by Nancy Lee Schipper on July 15, 2009 at 5:15pm
Heather,
My Prograf situation is exactly the same as your was in January. Just the past few weeks, going from a pretty stable Prograf level to a 20 - 3 weeks ago, cut down on Prograf to normal to a 22
today. Cut back again to 2/2. We have no answrer either for these strange levels. I too had my
P/K tx 18 months ago and all was going great -- until 3 months ago when a biopsy should slight
pancreas rejection so a lot of meds and IV's later we have it much better. But now dealing with
the Prograf level. I trust by now you are having good reads and what does your Prograf dose consist of now. Seems like everyones varies so much. Yes, these meds are quite the balancing
act. I too go from lab to lab, phone calls.
Have you been feeling good all this time?
Check back with me.
Nancy Schipper
Comment by Heather Hazlett on June 25, 2009 at 9:55am
Ah yes thankfully we got them back under raps! I started out the year at 7/7 and ended up at 2/2 and that's where I have been since January or February! My coordinator kept going over all the things that could make Prograf higher and I kept saying haven't done that nor that! Sometimes I thiink our bodies just have a mind of their own! I am back to labs just once a month for now!

High levels of Prograf can increase your potassium I do know that from experience! Immediately after transplant I had to take higher than normal amounts of prograf so they put me on Kaexolate (don't know if that is how to spell it sorry) and then eventually I was on Florinef, but since my prograf levels have gone down I am off of the Florinef. Oh I forgot they put me on sodium bicarb 3 times a day also to help the potassium problem. I still pay close attention to the high potassium foods, but in general now the level is pretty good.

Good Luck!
Comment by LISA WILSON KNIGHT on June 25, 2009 at 9:48am
Since your post was in January I thought maybe you have gotten prograf levels back in range. I am 11 months post op, and was doing great for the past 7months 6/6 then all of the sudden my levels shy rockted held doses, lowered to 5/5, then 4/4 and finally 3/3, and of course they are bottomed out, and on top of all of that my potasium is 5.5. Any ideas anyone?
Comment by Heather Hazlett on January 23, 2009 at 3:53pm
Cheryl I know what you mean about the phone ringing thing usually I can just tell from my transplant coordinator's voice what is going to come next!! The first time it went up to 23 she called me at about 7 AM to make sure I didn't take my meds until she figured out what to do next that one really got me worried!! I have had my transplant for 18 months now and the first several months were definitely ones of adjustment, but this came as a BIG surprise!! I do hope they get you all straightened out, Good Luck!!
Comment by Heather Hazlett on January 23, 2009 at 3:44pm
Thank you for both of your comments!! No I haven't added grapefruit to my diet I was aware of that right after transplant that's why this is all so very strange. No medicines have been changed in a very long time. I had heard on a transplant group that sometimes people just become more sensetive to it. I'm just hoping with the readjustment we can get things back to normal!! I actually take Florinef to help with high potassium which was due to the large amount of Prograf I used to be on maybe I will get to go off that one eventually. I see my Nephrologist on Feb. 2nd.
Comment by Ann on January 23, 2009 at 11:37am
You have not added grapefruit to your diet have you?
Comment by Donald Nygaard on January 23, 2009 at 11:10am
Mine has been pretty stable for 8 years, starting high and now maintaining level 5, with 2mg and 2 mg/day. I suppose other meds can cause problems. I just dropped my ursodiol, so I hope my level remains the same.
Comment by Cheryl on January 23, 2009 at 9:33am
Well, i have the opposite problem. My prograff level went to nil!! No change in diet, meds, etc except my coumindin med. i don't know if thier is a link or not, bu I am starting to think that changing and adjusting meds is an ongoing thing. I got my liver x last may, didn't get out of hospital until nov and my meds changed weekly !

I wish you well... i sometimes dread the phone ringing as it might be the doc telling me well.. we need to check on .blah blah. LOL

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