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Bye bye CellCept

Next month (June) it will be 4 years since my kidney transplant.  The donor was my wife.   Everything has been running like a top, except for a lot of skin cancers popping out on my face and scalp.   Late last year they seemed to become more frequent and more agressive.  For instance in the period December -February I had 5 MOHS surgeries, one nearly taking my right ear off.   My head looks as dimpled as a golf ball with all the surgeries.   I have been seeing a dermatologist every 3 months, and most of the the time there is a biopsy, and that invariably results in a referral to a MOHS surgeon.   The ear surgery required 7 slices and the whole ordeal took over 12 hours.

Communicating this to my nephrologist, I was referred back to my transplant team who suggested I stop my CellCept.   My present prograf dose is 1mg twice a day, giving me a 4.1 tacrolimus level.  This was 2 months ago, and luckily, my creatinine remains under 1.   0.8 and 0.9 respectively.   I am getting my labs done monthly now and hopefully can maintain a healthy kidney without the CellCept going forward.

I don't know what they have planned should the kidney start to go south.

I remain on 5mg of prednisone daily, and although there is no evidence of "moon face" I have developed osteoporosis.   The prednisone effect on my tendons has also caused an inoperable torn rotator cuff in my right shoulder.  

 

 

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Replies

  • Paul,

    Sorry to hear about the skin cancers. I'm a newbie with a little over a month since. My wife also was the donor. I'm currently on 6mg of prograf, 3 in the am and 3 pm. My current T level is around 6. I think the kidney doc is targeting around 8. 

    I have a question. My creatine went down to the lowest in the hospital to 1.5. For the past few weeks it's been fairly stable at 1.8. My question is did you experience the higher than normal number right after your transplant or has it always been low and with acceptable range. My wife is 5.7 140 pounds and I'm 6.2 at 210, if that makes a difference. My kidney doc says that number is good, but I was hoping it would be lower and with the prescribed range of 0.7-1.4. 

    If anyone can comment as well it would be appreciated.

     

    Many thanks,

    Robert

     

     

    • Hi  Robert,

      A few words about Prograf and Creatinine. Early on after a Tx, doses of Prograf are high and it is a bit of a balancing act to keep blood levels high enough to inhibit production the specific white blood cells that would attack your graft, yet low enough to keep from elevating creatinine levels and damaging it. The dose is derived from the results of blood work and there is no "normal," rather it is "tailored" to the individual. Your Tx team reviews results and adjusts it to keep your Prograf level (FK) within the prescribed range, many strive for between 6 to 8. Creatinine (Cr) levels are greatly affected by hydration, and also by medication, illness/infection, and rejection. It is important that you stay hydrated and try to keep blood draws to 12 hours from last dose (12-hour rule) for accurate results. Because Creatinine levels can fluctuate often, Tx teams use the number to identify trends (steadily rising or falling,) over a range of results to determine if an issue is starting rather than an instant-read of kidney function. 

      In time, your medications may taper down and the need for higher doses will lessen. With both my Txs, my dose dropped from 6 MG bi-daily to 1.5 mg, at six months out.

      Forgive me if you already knew this info.  Blessings to your spouse for donating  I wish you great success with your Tx and hope you both enjoy many, many years of good health!

       

    • At the hospital it was 1.2.   Make sure you are well hydrated.   Aim for 3 liters of water per day.   You may find your creatinine falls to a better level.   

      In fact, my levels are lower than my wife’s.   

      After a year or so they will decrease your prograf.    Are you also on the dreaded CellCept?

      • Paul,

        Thanks for the information. Doctors sometimes don't explaine everything. I appreciate the information and I did not know much of the information you shared in your post. Blessings to your wife as well. If more people relaized the gift of donation and how great it is more would do so.

         

        Regards,

        Robert

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