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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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Replies

  • 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.

    Regards

    Suresh c.

    Pls keep monitoring both pressure and Cr.

  • Been on Sirolimus 9 days now and off Prograf for 5.  So far so good!

    I get labs at the 2-week mark, which is next Thursday.

  • Day 4. Took my last Prograf pill tonight. 

    So far so good!

  • I've never had any pronounced irritating issues with the Prograf like tremors, shaking, twitching, etc.   I had not seen much change in kidney function according to the labs.  But the Docs said I was still young enough (yes they said that!!) that they wanted to be sure my kidneys were not hurt by the tac long term.  So sirolimus here we come. 

    Well, this is day 3.  No side effects that I know of. My natural awesomeness is still there.  But, probably too early to tell.

    Have to say, I'm hoping for some POSITIVE side effects.  LIke maybe I grow some hair back.  I get back my Tom Selleck rugged looks and Brad Pitt charms.  And last but not least, maybe I could loose some weight.  :)

  • If you can have a 'favorite' drug, sirolimus is mine. Early on I had a slight ache in some muscles when my dose was increased (or when I started it), but since then I've had virtually no side effects. No mouth sores, normal cholesterol, I heal well, reasonable WBC, and (knock on wood) I've never had an episode of rejection. I've spent the bulk of the last 15 years with this drug as one of my base drugs.

    Keep us posted. I hope things go as well for you as they have for me.

  • Yes, Steve, please keep us updated on how things go. I was switched from tac to sirolimus a few months ago. For me the transition was different and scary, but now that they have stabilized the amount I need to take my body has settled down. I do have fluid that gathers in the back of my throat that I can clear. My skin stayed dry, but not as it was durning the transition. I use a lot of moisturizers! These side effects are not nearly as bad as the side effects I had with tac and Prograf!! I pray for a smooth transition for you.
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