Transplant anti-rejection medications. What's your advice?

Posted by jolinda @jolinda, Apr 23, 2020

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?

Interested in more discussions like this? Go to the Transplants Support Group.

JK | @contentandwell | Jan 20, 2022

In reply to @nimalw "Hi JK. He monitors his tac levels every 2 months . It's at 6 now and..." + (show)

@nimalw That's the same as what I do. I have a battery of lab tests done every other month, including my immunosuppressant. I had to get off of tacrolimus because it was making my creatinine go high so I am on sirolimus now and all is well.
JK

nimalw | @nimalw | Jan 20, 2022

In reply to @contentandwell "@nimalw That's the same as what I do. I have a battery of lab tests done..." + (show)

Hi JK. How many months or years are you into your new kidney?

JK | @contentandwell | Jan 21, 2022

In reply to @nimalw "Hi JK. How many months or years are you into your new kidney?" + (show)

@nimalw My transplant was liver, not kidney, and it was in September 2016 so I'm about 5.5 years post.
JK

nimalw | @nimalw | Jan 22, 2022

Thanks JK. I wonder if we can ever get off prednisone? Looks like it's a life long drug sadly .

Cheryl, Volunteer Mentor | @cehunt57 | Jan 23, 2022

@nimalw & JK I had a pancreas transplant in 2005. The transplant center I went to had a protocol to avoid steroids. I was originally on Cellcept & Prograf (Mycophenolate & Tacrolimus). I had issues with Cellcept and it was changed to Rapamune (Sirolimus). When the change happened I remember being brought into clinic for an IV infusion of a steroid medication (I’ve forgotten the name). It was a one time thing and I’ve not had prednisone or any other steroid before or since then.

JK | @contentandwell | Jan 23, 2022

In reply to @nimalw "Thanks JK. I wonder if we can ever get off prednisone? Looks like it's a life..." + (show)

@nimalw I did get off of prednisone. I was on a very small dose and I sort of nagged my transplant team about getting off, telling them it had turned my bones into swiss cheese. They finally relented and let me discontinue it and YAY! all was fine.

I have no idea if I had other side effects from it but I do think it has affected my bones because I now have somewhat advanced osteoporosis and my endocrinologist thought that was probably the cause for it being as bad as it is. My sister is 3 years older than I am, less active, and she only has osteopenia. I think the familial connection would suggest we would be more similar without the interference of a drug.
JK

athenalee | @athenalee | Jan 23, 2022

In reply to @nimalw "Thanks JK. I wonder if we can ever get off prednisone? Looks like it's a life..." + (show)

@nimalw, certainly something to discuss with your team, as we’re all different. I’m allergic to prednisone, so was taken off of it a week after my liver transplant in August 2020. Thus far, no issues. I take 3 mg am/pm Tacrolimus and 500 mg am/pm Mycophenolate.

I hope you’re still sleeping better 💤!