Q. My daughter was put on generic Prograf (tacrolimus) as one of her immunosuppressants after a liver/kidney transplant. On tacrolimus, the levels of the drug in her body fluctuated widely, leading to one mild and one moderate liver rejection episode.
When she was hospitalized as a result of these episodes, they would administer brand name Prograf and levels of the drug in her body would increase dramatically.
She switched to brand name Prograf at home, even though it costs more. Levels of the drug in her body stabilized and she has had no more rejections.

A. Your story is extremely alarming. Tacrolimus is a lifeline for transplant recipients. We have passed your comment to the FDA. Anyone else who has experienced a generic drug problem can report it on our website (PeoplesPharmacy.com).

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  1. Mark
    Iowa
    Reply

    June, 2017. Just received word from UHC that they are terminating coverage of BRAND Prograf on July 1, 2017. I’ve been on Prograf since 2009 for heart tx with ZERO signs of rejection or complications. My tx coordinator indicated that they have seen inconsistent blood levels in their generic tacrolimus patients and is hesitant to switch me to generic. I am also questioning the exactness and efficacy of the generic, based on what I have learned. Based on my history and stability on Prograf, I am concerned about changing to generic after hearing these stories and doing some research. I have made an appeal to UHC to continue coverage of Prograf; it is still pending. I know Prograf is expensive. But the additional blood level testing and possibility of additional biopsy’s that will be paid by insurance probably can’t outweigh the annual savings on Prograf.

  2. anonymous
    greensboro, n.c.
    Reply

    I am afraid after hearing that my insurance will no longer pay for my prograf. I am a post liver transplant since 2006. My doctor sent a letter to my insurance company 2 years ago when my insurance tried the same thing and they relented. Apparently the FDA has insured my doctor that the generic brand is safe and effective. so now I have to take the generic form but now instead of blood work every month now I have to so it twice a month ( more costly to me). If things do go wrong I will instruct my lawyer to proceed to not only sue the manufacturer of the generic of prograf but also the FDA and my health insurance carrier. My family may never win but there will be a stir created that may draw attention to this plight. seems to me that these companies are more concerned with saving money than the welfare of human beings. those who have encountered problems and near death situations because of this should think about suing also. someone should be held accountable i also plan to bring this to the attention of Congress and as far as the office of President. We must not allow anyone but our Physician make the final call on our medication.

  3. Coral
    Indiana
    Reply

    My 6 year old was switched to the generic form of Prograf also. Although her liver numbers remained stable it had a horrible effect on her skin. She had mild eczema on her hands, but after a month or so on the generic it got worse and continued to get worse until I switched her back to the Prograf. Within weeks of switching her back her skin started to improve and hasn’t gotten worse again. Everyone I talked to made it seem like I was crazy to think the cause was the generic medicine. I took her to numerous dermatologists, tried all kinds of steroid creams and even alternative remedies. I feel bad that I didn’t just switch her in the first place, but nobody else had any problems with it so I figured maybe her eczema was just getting worse for some other unknown reason. :(

  4. Angel
    Texas
    Reply

    Was also switched to generic Prograf two months ago by my insurance company (who refused to pay for brand name). I have not felt well since, to the point that my TX clinic tested me for rejection. Thankfully, I am not in rejection, but in the process of appealing to insurance company. I have extreme fatigue, low energy and difficulty sleeping. Heart Transplant – 2008. Anyone have success with appealing to their insurance companies?

  5. Judith
    Westport
    Reply

    Was switched to generic tacrolimus 6 months ago from progrof over these months have had increaseing body weakness, also soreness and stiffness moving and walking. Has anyone developed these symtoms also? Kidney transplant 2007,

  6. C.Ferrante
    Reply

    I have been on Prograf for 6 years for my kidney transplant and I doing fine. Now my insurance will not pay for Prograff and I will start on Tracrolimus_Generic Prograff.I tried it about 2 years ago and my creatine went up-THEN WENT DOWN WHEN I WENT BACK ON PROGRAF!
    I am worried I may lose my kidney DUE TO POOR INSURANCE. SAD WORLD! I will keep you posted.

    • Derek
      new jersy
      Reply

      My son and I did a transplant in 2006 almost 10 years strong and then they switched him to generic prograf and today June 29, 2016 he underwent another transplant thankfully the surgery went well. We are digging our heels this time and accepting generic and going to just pay. My last point if generic and brand are the same then there would not be a need for one to be at a higher price point.

      A father that will not let price affect his sons life

  7. Dolores
    Reply

    I am so very sorry that your husband lost his transplant kidney. It’s hard to believe how much we (Transplant pt.) go through, switching to generics and then on top of that!!! They switch us to other generics as though it doesn’t really matter, I could tell horror stories of what I’ve gone through. I pray you will get another Kidney and that you won’t be switched around with your meds. God Bless You and your husband, being on dialysis is rough once you’ve had the freedom of transplant.

  8. Jim C.
    Reply

    I too had problems with a generic substitute. Treating a DVT with warfarin, my INR/PT bounced around like a rubber ball (1.0 -9.7 with the same diet). Changing to Coumadin, my levels stabilized and remained steady for more than a year during my treatment.

  9. Anonymous
    Reply

    My husband was hospitalized for acute kidney transplant rejection in Feb 2010. In the hospital the doctor was very concerned when told that he had switched a few months earlier to the generic form of tacrolimus. He had previously been on Prograf for years with no rejection problems. The doctor said that they had at least 2 other patients who were treated for rejection after switching to the generic. We couldn’t believe it, having switched after asking the nephrologist if it was OK to do so.
    Unfortunately my husband’s transplant couldn’t be saved. He is currently back on dialysis waiting for another kidney transplant.

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