I have a question concerning prograf costs.  I signed up for the prograf value card.  In order to get the discount with the card you have to use brand name prograf.  My insurance charges a much higher cost for brand name than generic tacrolimus and they will not honor the value card for prograf.  My transplant coordinator said that if I went on brand name prograf then I have to remain on it and I can't go back to the less expensive tacrolimus.  My transplant center will only dispense tacrolimus.  My local pharmacy will not tell me what the brand name prograf will cost unless I fill a prescription. I am 1year and 5months out from my heart transplant and I have had no issues.  I'm just trying to get my costs down.  Any thoughts would be greatly appreciated.

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  • I have always gone through  the mail order for my Medicines its cheaper depending on insurance to change your prescriptions to 90 days other than 30 day refill thats how i save i prob spend between 5 or 10.00 every 3 months for my medicine

    • Unfortunately Medicare and my private insurance will not allow 90 day supply. Their maximum is 30 days. Their reasoning is that doses change frequently and these are very expensive medications. They don't want patients to stockpile. Ridiculous. We need flexibility. One cannot get a new prescription everytime a dose goes up or down and it becomes a nightmare to get the new prescription in the 30 day window if you actually need more drug. Convincing them that a buffer supply makes sense is not possible so far.

  • Steve,

    Insurance companies have compendia lists of drugs and costs. There is also a diference if you get mail order or retail drugs.  Mail order is not always cheaper. Despite some claims to the contrary, generic drugs are not exactly the same as the brand name drugs. Although the active ingredient may be the same, the formulation may be slightly different.  It is not supposed to, but it can effect bioavailability.  My center prefers that we use brand name Prograf for consistency. If we use generic, then following blood levels is the best way to make sure your levels are in therapeutic range. One of the notes below noted that manufacturers of generics can change and that is where potential issues arise. Many transplant recipients are on generic and do just fine but may require dose adjustments when the manufacturer is switched.


  • I had a bi-lateral lung transplant 7/9/10 and have Never paid anything for my prograph, cellecpt, or predisone. I have Medicare ABD  and J. I still occasionally have to use Valcyte for the CMV. I;m off now, but just for "grins" I asked the phasmasist what I would have to pay now $ 1326.00 vs $ 162.00 last year till I'm out of the Donut hole. Check with your transplant co-ordinator and they will print out your meds in categories of what % each will be paid by insurers. Hope this helps.

  • I had my transplants after reaching 65 years old and was on medicare and supplement insurance. Hope all that are in that age bracket when receiving transplants knows that medicarepicks this up for no cost under the plan part B, other anti rejection drugs are also included at zro cost. Wish everyone had that asset.

  • Hi Susan,


    I trust my transplant team as well and I know that they have my best interest at heart.  They have been doing heart transplants since 1985.  I am 1 year and 9 months into this and I was confused about the difference between generic and brand.  They assured me that in clinical trials there had been no increase in rejection between generic and brand.  They wanted me to stay on generic or brand and not switch back and forth.  The only side effects that I have had is some tremors. 

  • Hello Steve,

    I had my Pancreas and Kidney transplant on January 15, 2012 and, of course, while in the University of Chicago Hospital recovering, I was given brand name Prograf. When I was released, but still staying in Chicago and reporting to the surgeons and nurse coordinators, when I went to fill the prograf prescription it was filled with generic. My nurse coordinator had no problem with it and showed me clinical tests that had been done comparing the two drugs. There was no indication that the brand prograf was any different than generic.

    Honestly, I trust my team at Chicago and the Surgeon the performed the fist Kidney and Pancreas transplant was overseeing my case.

    Having any side effects? I am.

  • Steve, We have to get our blood tested regularly to insure the correct levels of prograf along with everything else. This is true whether or not we are using name brand or generic prograf. If we switch prograf manufacturers, then we need to have a couple of extra tests to insure that our levels are stable and still correct. My doctor tells me that this is not a concern with cellecept, only prograf.

    I am now 5 years out, and I get blood tests (along with x-rays, pft's, etc.) every 4 months. If I were to switch brands of prograf, I would need to get extra blood tests for a couple of weeks to insure that the levels are correct. After that, I would go back on my regular schedule.

    BTW, Cool that you are off pred. I'm still taking 7.5mg daily.

  • Thanks Jay for the information.  Now I understand why the concern about generics for the anti-rejections.  So the bottom line is if you take generics make sure your levels are tested on a regular basis.

    • I have never heard of not being able to switch back either. In fact I just did. The generic prograf made my blood levels too high. Potassium was 5.8, the runs and the blood trough level was nearly 8! So I switched back. You just have to get levels checked more often on generics. 

      Steve said:

      Thanks Jay for the information.  Now I understand why the concern about generics for the anti-rejections.  So the bottom line is if you take generics make sure your levels are tested on a regular basis.

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