Transplant anti-rejection medications. What's your advice?
Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?
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@amkaplin I had a pancreas transplant 17 years ago at a center that had a protocol to not use steroids (prednisone) because of the side effects. I believe I had some other steroid med once or twice in an IV infusion early on but never had any ongoing oral steroid meds long term. That was a long time ago. I think newer and better immune suppressants have been developed since then.
I have to say I am AMAZED that u had a pancreases transplant and u are going on 17years. It is so wonderful to hear I am in aw how our bodies are able to accept a organ from a donor and it works in our bodies. Congrats again to u.
@myfablife it was my own personal miracle, a true gift from God!
God is so good. I am almost 2yrs LT
Again I am so happy for u.😊🦋
I take mycophenolic acid 360mg twice daily and tacrolimus 1.5mg twice a day. I used to take 5mg of prednisone immediately post transplant, but I was, like you, developing diabetes as well as the start of a cataract in the right eye. Even though the dose of prednisone was small, they decided to take me off of that and that’s when I began the mycophenolic acid instead. I had a liver and kidney transplant and I am almost 9 years post transplant.
A frank discussion with your nephrologist and transplant team should lead to a solution for you. I hope all the best, and hang in there.
I had been on Imuran since my transplant - 11 years ago - but switched to Myfortic 7 weeks ago. I also take Prograf. The reason for the switch was I was having so many skin cancers and Mohs procedures every year, get worse as the years went on. I think I’m having weird side effects: I’m feeling very spacey, having trouble finding words; my feet and ankles are swelling by mid afternoon; overall lethargy. Has anyone else experienced anything like this? I have sent a message to my team. Thanks and happy holidays!
Did you have a kidney or LTP? Also interested after 11 yrs. How much meds do u have to take. I am on celcept Prograf.
@myfablife Im on Prograf - and have been since my kidney transplant - and had been on Imuran until this switch to Myfortic. At the time that they changed me to Myfortic, I also doubled my dose of amalodipine for blood pressure. Turns out the amalodipine was causing the swelling, etc. I have gone back to my old dosage and am hoping this will get me back to normal - whatever that is!
I am 2yrs post liver transplant on 13/14th January...overnight surgery.
Am now waiting for a kidney transplant.
Hi u had a LTP and now need kidney is that what I am understanding?