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General

Sirolimus

TiaBeanTransplant Patient
June 23, 2025 in General

Is anybody taking Sirolimus? I was taking Tac, but the brain fog was insanity. I am now switching to Siro, so I am wondering about any side effects anyone has had with this. I am good so far. A month in. Just fatigue. Always fatigue. Even with Tac.

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1 - 12 of 12 Replies

  • onlylivingboyinnyTransplant Patient

    If you don't mind me asking, what brand of Tacro were you on?

    June 23, 2025
  • TiaBeanTransplant Patient
    June 23, 2025
  • SteveJPearsonTransplant Patient

    I too switched from Tac to Sirolimus. Only side effect I had from Sirolimus was mouth sores for about 2 weeks. All good since then over 5 or 6 years ago.

    June 23, 2025
  • TiaBeanTransplant Patient

    @SteveJPearson When did the sores show up? Been on it for a month. Nothing yet. The side effects they warn about are scary sounding. Lots of derm issues.

    June 23, 2025
  • SteveJPearsonTransplant Patient

    The sores were there by day 3 or 4. Doc had advised about the sores, but I guess not everyone gets them. Lucky Me!

    I had no derm issues or other side effects. I initially took 2 mg once per day and then was reduced after a few years to 1mg once per day. Maybe my dose is on the low end and thus no other side effects?

    June 23, 2025
  • TiaBeanTransplant Patient

    @SteveJPearson Definitely low dose. 1.5 mg. Maybe I just found my med. Yay! Thank you for sharing. Do you take any other anti rejection meds? If you don't mind sharing.

    June 23, 2025
  • SteveJPearsonTransplant Patient

    Yes, I also take 360mg of Myfortic twice per day.

    June 23, 2025
  • TiaBeanTransplant Patient

    @SteveJPearson Nice. Thank you!

    June 23, 2025
  • JimrIIITransplant Patient

    I also am taking the sirolimus, my team lessened my taco dose and added a small dose of the siro, which I too had a issue with the mouth sores, I dealt with them for a couple weeks, I also had a little diarrhea that didn’t last long either..

    have been doing well with the change now, it’s been about 9 months.

    good luck!

    June 23, 2025
  • onlylivingboyinnyTransplant Patient

    Yes. I'm just curious if your Tacro is extended release (every 24 hours) or 12. Symptoms can sometimes be more present in the 12 hour doses.

    June 23, 2025
  • SteveJPearsonTransplant Patient

    "I also am taking the sirolimus, my team lessened my taco dose and..."


    My heart Doc cut back on my taco dose, too.

    🤣

    June 23, 2025
  • TiaBeanTransplant Patient

    @onlylivingboyinny I was on the twelve hour doses. I have never heard of the once a day Tac option. I have kidney issues, so Sirolimus is given to kidney transplant patients. Maybe it will be right for me. Any appetite issues? I am having them now. No appetite whatsoever.

    June 23, 2025
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