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

Hi Rosemary. Yes this also what I hear from a few who are on pred long term
My kidney transplant is now just under 4 months . Pred is the only drug that gives me side effects. I will follow the doctors advise and accept and take it as it comes
Thank you 🙏

@nimalw, I think that you had a kidney transplant. And so I want to jump in with my experience.
I had a simultaneous liver and kidney transplant: 2 organs, 1 surgery, 1 donor . I also was prescribed prednisone along with my Tacrolimus and Cellcept. The prednisone dosage was gradually lowered over time, but I remained on a 5mg daily dose. After hearing so many negative comments about prednisone, I also began to ask about it. The answer to my inquiry was interesting, - and I think that it demonstrates the differences that are required for our individual medical needs. The liver team had a different opinion than the kidney team. (Yes, I have 2 transplant teams). The best answer was given by the doctor in the kidney transplant department. He said that the research, at the time, showed that 'for me' there was a benefit to staying on the low dose of prednisone. That was what I needed to hear!
For approximately 8 years I remained on 5mg daily prednisone without any complications or decreased bone changes. In 2017, during my annual evaluation, I was told that I could taper off the prednisone because of some new related research.
It can take a while for your body to adjust to a new normal 'for you' lab pattern. How long ago was your transplant? What is the opinion of your transplant nephrology team?

My main concern is its starting to elevate the blood sugar levels which I never had before

Thanks jK I shall try nagging this week!!! When I see the doctor. Hes a nice man very caring doctor. I think hes anti pred as well

Thank you . I am definitely asking the question this week when I see my doctor

Thanks Anthea yes am sleeping better. But slightly jittery at times !! I really hope I can get off this drug. Let's see how things go

@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 💤!

@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

@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.

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