Prograf

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Comment by Dan on April 15, 2012 at 11:25am

I am now 13.5 months post liver transplant. Yesterday I was advised I have been accepted into the study to wean me off Prograf. I am now 6mg/day of Prograf with a Tac level of about 5. The study consists of the reduction of prograf hopefully to zero over a period of a year. My tx recovery was quick and I was able to get My FAA Medical back 108 days after TX. If I have any side effects from surgery or medication I am unaware of them.

Comment by Debi on April 12, 2012 at 7:56am

I had such a difficult time getting the prograf balanced (one week 4, the next week 16) that they are happy with the 8 I am able to maintain. Unfortunatedly, a year and a half after my heart transplant, the prograf took my kidneys. I was EXTREMELY compliant with all orders, but we were unable to maintain there function. So my advise to you? If you can maintain non rejection on a lower dose, go for it!! More is not better...

Comment by cindy on April 3, 2012 at 12:57pm

hi Kristy no im not on myfortic they took me off in june sorry it took so long to answer

Comment by Kristy on March 26, 2012 at 11:31pm

Hi indy - I am 4.5 months post pancreas transplant and have had many and miltiplle experiences with problems people are having - lucky, I guess ha ha.  Anyway - do you also take Myfortic?  My docs have taken me off of it twice for a few days and they blame that and the Bactrim, not the Prograff, for my low WBC.  Mine got down to 1.1 before they did anything. . . I required an injection of Nupogen to help raise the WBC    It worked, but they watch my counts veyt closely and discontinue them for 4 days or so before repeatung the vicious cycle.  My white  blood count lingers around 2.5 - 3.0 and the docs are okay with it there despite being low, I guess it's  not dangerously low.

Comment by Melinda on March 26, 2012 at 11:00pm

in Answer to the question by Stottie.....I am on 3mg twice a day right now.

Comment by cindy on March 26, 2012 at 7:07pm

oh I take 3mg in the morn and 2 at nite

Comment by cindy on March 26, 2012 at 7:05pm

hi Im cindy I had my transplant on 4 4 11 Im doing good except for my white blood is always low 2.1 and they say there is nothing i can do to help but you know what I still feel great and Im thankful for my donaner family and my doctors and nurses and my family and friends and all of you here at transplant friends and buddies

Comment by Mark on March 14, 2012 at 10:46pm

Liver tx last July.  My prograf was reduced 3 mos. ago from 2mg x2 to 1.5mg x2.  Up to then, the trembling in my hands prevented me from even writing.  After the 1/2mg decrease, the trembling began to subside.  Until I read these posts, it hadn't dawned on me that my hands are now steady once again.

Still wishin' and hopin' for that hair loss reversal some of you mentioned :)

Comment by Kristy on March 14, 2012 at 8:58pm

The hair loss is the latest great Prograff surprize. . .I put a call in tonight to ask what they recommend for the globs of hair in my shower, and I hope ethey don't tell me a plumber!   I have struggled horribly with the headaches and shaking hands.  Of course, the post care team tried to tell me the headaches were migraines, depite my never having had them, and them only occuring post transplant, and worsening when prograff levels were too high - but tey were masty, and have gotten better, despite prograff levels bouncing all over.  The shaking hands have been a beast.  It has made going back to waitressing quite the challenge.  Thank God some days are better than most, but - yes - a huge inconvienence!

Comment by Susan on March 14, 2012 at 8:35pm

I had this problem after transplant. I was afraid I was going bald. I thought it was due to my protein levels that were really low. I had no appetite and got down to 98 lbs. I try to ea right. My hair has gotten much better in the last 6 mos. Good luck to everyone. Also I used nioxin hair products for thinning hair.

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