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Transition from Prograf to Sirolimus

I posted a while back about tansitioning to Everolimus.  Well, since my insurance does cover Sirolimus (apparentl some don't)  that is the drug my Docs prefer I take instead of Everoliums.  I take my first dose of Sirolimus tomorrow.  I"ll stay on 720 mg BID Myfortic. 

Here's the program:

   1. Take all current meds (including Prograf) plus 2mg/day of Sirolimus.  Do this for 4-days.

   2.  On day 5:  No more Prograf.

   3.  Labs 2-weeks from tomorrow.

   4.  Hope I don't get the mouth sores!

They advise that for 2-weeks I'll be very, very immune suppressed.  This becuase I'll still have some Prograf in my system and the Sirolimus will be there, too.  

I'll let you know how things go!  

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  • Hi, I was on sirolimus with my first kidney transplant for about 10 of the 15 years and what I can tell you is that, it destroys your teeth I had an root canal like every six months. I could not understand way this was happening.  Then one day I started googling side effects of the drug and sure enough it was causing this problem.  I spent a lot of money at the dentist, because at that time I was working in a bank.  I have since had my second transplant and the Dr. didn't even consider that drug as part of my regiment.  I now do the tacrolimus and  myfortic .  Thanks  Pam

    • I am sorry to hear that. I know from what my doctor said the list of side effects from sirolimus is longer than the other two drugs. I wonder what the percentage is of people who had the same side effect as you? I have only been on the drug about 3 1/2mos. So two early for me. I did have extremely dry skin while transitioning which is much better, but now my heart rate has increased by 10+ pts while at rest. I also have a sparatic cough. So maybe this drug effects each of us in different ways. I don't know? Sometimes I think the doctors wait to see how your body is going to respond to the drug because they don't know which of the many side effects you may exhibit. I still feel so blessed and enjoy everyday the Lord give me.
      • Very true drugs have different effects on different people.  I like to share my experience in case someone goes through it they're not lost.  With my first transplant their were no sites like this although I had my doctors, I needed to hear it straight from people like on this forum.  I thank God everyday for his Grace because it is what has carried me this far. I wasted  so much time trying to figure out why this happened to me.  I now just want to help in anyway I can.  Blessings

    • Oh no!  First I've heard of that side effect.   Plus, my Googling and looking on the Rapamune website does not find anything about gum, tooth, etc. problems except the mouth sores. 

      Can you give me a reference?

      Does it affect everybody or just the unlucky few??

  • Got back my labs for a CMP and a CBC.  Everything was normal except for lymphosites!!  Even my blood sugar was back down into noraml at only 94 (had been 101 to 111)!  

    I did not get the results for Sirolimus levels, but I'm taking what the Docs said is the "normal dose".  It'll be what it will be.  

    Still got a sore on that inner lip and I'm hating it.  They expect it to heal up in a week or two.

  • Hi Steve, thank you and everyone for posting your journey on the medicine change . It really helps to have someone with first hand knowledge tell their story. Happy Thanksgiving all. Blessings. Mary
  • 14-days and I now have an "ulcer" on the inside of my upper lip.  Ouch!  My coordinator prescribed a steroidal ointment this helping a lot.  

    My blood pressure is 15 to 20 points higher.  At least according to my "at work" unit my BP was 157/85.  My at home unit shows it up just a tad.  I'll see my doc ASAP this week.  BP needs to get back down to around 130/80. 

    Otherwise, I'm doing OK. 

    • So sorry to hear this. It may be your body adjusting to the med. Is your sirolimus level where they want it or are they still adjusting the med? I know it takes time for it all. I am at 3mos. a marker for me. I had one sore on my tongue that is gone. Now my heart rate has increased by 10 points. If it continues to be high I will let my coordinator know. I usually run in the 70's and now it is 88-90 while at rest. I pray these things resolve for you and this med works well. Thanks for sharing.
      • Just started 2-weeks ago, so no adjustments yet.  My first labs will be drawn tomorrow.  I'll let you know how it turns out by about Wednesday or so.

  • Steve not much of changes i felt during transitions.


    Suresh c.

    Pls keep monitoring both pressure and Cr.

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