General — TransplantLyfe

General

What transplant-specific medications are you taking?

DonnyCTransplant Patient
May 12, 2022 in General

What immunosuppressive medications & dosages are you taking right now? Have you had to change these medications and/or dosages and why? Include your organ and years post-transplant for your most recent transplant. Would like to get an idea of what you guys are on.

1 - 30 of 48 Replies

  • MarkliveTransplant Patient

    I don’t mean to be rude, but you go first.

    I am on 2 different meds. 3 years post. My meds haven’t changed in 2 years.

    May 12, 2022
  • JimGleason_TRIOTransplant Patient

    That information isn't very useful since it depends on too many other factors. Your weight, time out from transplant, type of organ and individual transplant program protocols all contribute to each patient's unique circumstances. Even the change of medications over time, replacing some earlier ones with more effective ones, both brand name and generic also cause differences.

    May 12, 2022
  • DonnyCTransplant Patient

    Great point. Should have put that in the original post!

    May 12, 2022
  • DonnyCTransplant Patient

    10yr double lung.

    2.5 mg tacro & 500 mg mycophenolate, 2x daily. 5 mg prednisone every other day.

    May 12, 2022
  • DonnyCTransplant Patient

    IMO, usefulness depends on intent. My intent is to broaden my knowledge base and awareness. It's useful for me to get a broader view on what others are taking and reasons for change, if any. @Karin mentioned she switched to azathioprine because of GI issues. I wasn't aware of that nor was I aware that it is indicated for pregnancy while living with organ transplant. I was interested to learn about her experience with that medication and I believe others on this forum may interested to hear of her experience, and others, as well.

    May 12, 2022
  • DonnyCTransplant Patient

    Reduced over a period of 1 year from 4 mg tacro & 1000 mg mycophenolate, 2x daily, and 10 mg prednisone daily. Initiated to reduction to mitigate toxicity.

    May 12, 2022
  • AliEm14Transplant Patient

    I feel like there are so many factors as to who takes what. Every single body is different, responds different, needs different things. I find it also varies on where you live (I’m in Canada and from what I can gather we do things differently here) and what the protocol is in that area/at that hospital/who your doctor is.

    my team and I have changed my medication and dosages based on my own individual body constitution. All changes are based off my lab results

    May 12, 2022
  • DonnyCTransplant Patient

    Sure, @AliEm14, I think most of us realize the that each txp program has specificity for waitlist criteria and post-txp protocol. This couple with each individual’s uniqueness makes treatment protocol unique as well. I am interested in learning about others, their immunosuppressive medications, and reasons for change, if any.

    May 12, 2022
  • AliEm14Transplant Patient

    @DonnyC i’m on tac. Just tac. They switched me from twice a day to once based on my personal lab results. Started me on cellcept right after transplant but I stopped that after 9 months (I think? We started weaning at 6) as was always the plan, and was able to be done because I was so stable. Tac dose is adjusted as needed with labs.

    May 12, 2022
  • AILazarusTransplant Patient

    I’ve been on the same dosage probably for 10 years. I’m 12.5 years out.

    cyclosporine

    75 mg

    2X Daily

    May 12, 2022
  • mandym444Transplant Patient

    I take 3mg of Envarsus once a day for my liver transplant. I’m a little over 1 1/2 years post-op

    May 12, 2022
  • DonnyCTransplant Patient

    @mandym444 Interesting, I have to read up on Envarsus. Not familiar with it at all but want to learn. Thanks for sharing!

    May 12, 2022
  • Slm75Transplant Patient

    Renal Transplant over 35yrs out

    500mg mycophenolate once a day

    Prednisone 5mg everyother day

    May 13, 2022
  • MJK15Transplant Patient

    Currently at 7 years post preemptive living donor kidney transplant and 69 years old, I take 2mg Envarsus XR once daily, 750 mg mycophenolate twice daily and 4 mg prednisone once daily in the am. Originally was on mycophenolate and tacrolimus. Prednisone was added at 3 months due to dangerously low WBC that didn’t improve with various treatments. Tacrolimus was replaced with Envarsus a couple of years ago when there was a tacrolimus shortage. I started on higher doses of all of my transplant meds which decreased over time and based on my labs. Labs are every 3 months.

    May 13, 2022
  • DonnyCTransplant Patient

    @Slm75 Goodness! First, congratulations on that phenomenal life span since your transplant. Were you on tacrolimus at any point over the past 3 1/2 decades?

    May 13, 2022
  • DonnyCTransplant Patient

    @mandym444 Most of us experienced some side effects, especially tremors in our extremities, when we first began the regimen following surgery. Did you experience the same? Or maybe different side effects?

    May 13, 2022
  • DonnyCTransplant Patient

    @AILazarus congrats on almost 13 years post. I’m assuming you’ve always been on cyclosporine?

    May 13, 2022
  • DonnyCTransplant Patient

    @AliEm14 do you feel comfortable in sharing your current tac dosage?

    May 13, 2022
  • DonnyCTransplant Patient

    @Marklive are you comfortable sharing if you are on the tac (or the Envarsus) and mycophenolate and the dosage?

    May 13, 2022
  • Slm75Transplant Patient

    @DonnyC No, I started with Cycolsporine, Imuran and prednisone.

    May 13, 2022
  • DonnyCTransplant Patient

    @Slm75 Imuran wasn’t effective enough for your situation and the cyclosporine was a scheduled roll off?

    May 13, 2022
  • DonnyCTransplant Patient

    @MJK15 really, really interesting information. Remember hearing about the shortage but you are the 1st that I’ve heard that was actually affected by it. Did you notice differences between the Envarsus and tac, or did you feel differently the first few days or so when you switched?

    May 13, 2022
  • Slm75Transplant Patient

    @DonnyC Imuran keep causing my WBC to drop to zero, so they took me off. About 13 yrs in they said Cyclosprine was an old drug and had alot of long term side effects. They switched me over to mycophenolate.

    May 13, 2022
  • Slm75Transplant Patient

    @DonnyC My kidney was a perfect match. My younger brother donated. They said I really didn't need very much meds.

    May 13, 2022
  • DonnyCTransplant Patient

    @Slm75 fantastic to hear. I understand that familial LKD is about the safest and most successful organ transplant that they have. Obviously went well for you! Awesome!

    May 13, 2022
  • AILazarusTransplant Patient

    DonnyC

    yes always on cyclosporine/Neoral brand name. Side effects yes but keeps my liver function on spot

    May 13, 2022
  • mandym444Transplant Patient

    @DonnyC immediately after transplant they had me on prograf and that gave me severe tremors so I was switched to Envarsus with no side effects. The only issue I really had was being anemic which included blood transfusions

    May 13, 2022
  • Mizzvi19Other

    @AliEm14, curious as to what organ did you receive?

    It would to know what organ each person received in their response. Some are mentioning it and others aren’t.

    I had a heart transplant.

    May 13, 2022
  • AliEm14Transplant Patient

    @Mizzvi19 i’m liver

    @DonnyC i’m on 5mg of advagraf (tacro) currently.

    May 13, 2022
  • StephenCFTransplant Patient

    started: tac, valcyte, mycophenolate, bactrim, prednisone


    currently, 11 years later: tac, bactrim, sirolimus, prednisone.

    May 13, 2022
Sign In or Register to comment.