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  • I have been taking Prograf / Tacrolimus for two decades, I learned by asking and I ask numerous medical professionals constantly, about everything. 

    Shortly after ingestion, blood levels peak and drift down over a 12-hour cycle unless you are prescribed a time-released formulation. This time period is important for two reasons, with the intent to produce a steady blood level (hence the bi-daily dosing.) A recipient should develop a routine that works for them, keeping doses in a timely manner. With regard to bloodwork, adhering to the 12-hour rule is equally important (try to time your blood draws to 12 hrs from your last dose for accurate readings.) You owe it to yourself to ensure that you take only enough Prograf to protect you, as your doctors want while limiting the side effects due to spikes and overmedicating. Stay hydrated as even mild dehydration can make levels spike. Good luck to everyone in finding what works for you!

    • Hi Kidneyboy thanks for the info 😊. Wow 2 decades is awesome. My aunt had a kidney transplant 3 years ago and she's doing well also. I ask questions regularly myself and do alot of research. I'm 16 months in so far and looking for many more years also. 

      • The two decades include two Txs, 2000 and 2013. I have many health issues, as well, but I still rise gratefully every day! I now ask questions not only to learn but to judge new physicians by their answers to questions I already know about.

        • I myself do the same thing. I've had 3 stents in my bile duct and rejection. Now I'm experiencing problems with my pancreas which I feel is associated with the stents. They gave me Zenpep but side effects are bad and will cause more problems with kidney and colon. I finally got them to do a ultrasound of my pancreas and im waiting for appointment. They were acting like nothing was wrong and saying your labs are good so don't worry. I know my body and told them that something wasn't right. My liver transplant was a true blessing and I thank God everyday for the gift. There are some days that I don't feel the greatest but like you said im grateful and so blessed. Thank you for sharing with me and stay strong. God will see you through. 

          • Gratitude only goes so far, there is nothing that produces more clarity than your own voice! Rem. without us there is little need for them, since you are in charge, you owe it to yourself to make this second chance at life as good as it can be!

            • I am honored to be part of this membership, who reach out to help our own!

            • So true I do agree with that. I tell all of my doctors and my coordinator all my concerns and they always question me but I tell them that if they won't help me I will get it somewhere else. Your right about making the most of this 2nd chance that was the whole part of having the transplant. 

  • Yeah.  Tac.  Prograf.  Been on it now for ... close to 17 months.  The highest dose I was on was 6 mg. total per day, and the lowest dose i have been on is 3 mg total per day.  I am currently on the 3 mg.  I was hoping the hair would start to do better with the lower dose, but it doesn't seem like it.  Well, the huge clumps of hair are not falling out as badly anymore, but I am still very  low on hair and still experiencing a lot of loss.  Texture changed, it is also weaker, it breaks easily, and I really have lost at least half of my hair.  Possibly 60%.  Really looking forward to decreasing it and coming off of it when I can get back on Belatacept.  But I haven't been able to due to stupid COVID-19.  They stopped all Bela infusions and just now started them back.  I have also had BK virus and needed to decrease a lot of meds so that I could fight off the BK.  It has finally decreased a lot and I was hoping we could get the show on the road as far as finally getting the Prograf down and then off of it but it has taken forever between the two problems.  BK virus that I have and the COVID virus that everyone else has.  So!  Curious.  Has anyone out there switched from Prograf to Belatacept.  I began on Belatacept and Prograf and only came off of the Belatacept about 5 monhts ago for the BK problem.  Then could not get back on it due to COVID.  But I know a lot of centers are now starting to offer Belatacept.  Anyone start on Prograf then come off of it and their hair finally came back?  I am also on Prednisone which I know causes some alopecia, but I feel it is mainly the Prograf.  There are a few other drugs that I am on that cause a small amount too.  Maybe not in everyone though.  So we will just have to see!  But i had always had the thickest hair my whole life and people have really noticed how much I have lost.  I hope your hair has grown back everyone.

    • Hi Amanda T, my hair was dry, brittle and thinning also. I used biotin shampoo and conditioner for about 2 months faithfully and it slowly started coming back. It's been 16 months since my transplant and I've had rejection and 2 liver biopsies. They upped the prograf and put me back on prednisone for 6 months! I gained some weight but that's part of the side effects. All in all I would have to say that despite the bumps in the road as I call it I'm so grateful for this 2nd chance at life. I've never taken Beltatacept before is it for liver transplant? And what is BK virus? Amanda stay strong and positive and lots of prayers for you and all the rest of our transplant buddies ❤. God is great and Faith will see you through. 

  • I am two years plus post liver transplant and I take .5 mill x 2 and doing much better now. I had terrible side effects when they had me at 8 mill x 2 uncontrollable shaking and twitching night sweats and numbness in my feet. It took about 1 and a half years to get my prograf down to this level. I had to bug push my GI doctor and now they monitor my blood each month to make sure I still don’t have any rejection danger. I feel so much better now so I hope this level of prograf works for me. A funny story about the prograf when they had me on such a high does I had uncontrollable twitching and went to the ER and they couldn’t figure it out so the last thing they recommended was a psych evaluation so I left still twitching. I went back to the surgeon for a follow up and the first this they said to me was I was overdosed on Prograf and the symptom was called “noodling” I asked if that was a medical term and they laughed. Haha That was the good news but the bad news it takes two weeks to get out of your system. Hopefully you can avoid such a situation. 

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