Kidney Transplant - Side Effects of Immunosuppressants

I am 6 years post kidney transplant and have been off of the 5mg of prednisone for five years. I explained to my doctor I did not want to be on a steroid long-term. He said the 5 mg is such a low-dose, there would be no side effects. I said I would like to try a year without the steroid, and he allowed me to go off of them. I have had no adverse effect off prednisone. I just had my blood work done and my kidney is very happy and always has been. I understand that immunosuppressive drugs are the trade for life with a functioning organ. I also understand that each body is different and therefore responds to medicines differently. I make it a priority to have a dr who listens to my concerns and allows me to adjust accordingly, when possible. It is a balancing act, and all members of the team need to be working together.

My husband is a little over 2 months post kidney transplant. Thankfully, his kidney is working fine and his meds are being monitored by weekly lab work. His nephrologist pointed out that his liver enzymes have been very slightly increasing in the past few weeks. He said that he will keep an eye on it, but didn't sound too worried. Have any of you experienced this as a result of immunosuppressants? Thank you,

@stephanierp Hi, I read your post and that your doctor told you that you should have no side effects from 5 mg prednisone. My doctors said the same thing to me. My question is, were you experiencing any side effects, and if so, were they better after you went off prednisone?

@taco It is difficult to know which medicine caused which side-effect, as I went on all of them after my transplant. I was experiencing blood-sugar issues and significant brain fog. At that time, I was on Tacrilimus, Mychophenalate Acid, and Prednisone.

We switched out Tac for Cyclosporine (which has its own set of side-effects) and removed Prednisone. Again, all while testing to insure kidney was adjusting well. This worked for me in bringing my blood sugar back to normal and removing the feeling of walking through my days in a fog. However, within two months, my cholesterol levels began climbing (side-effect of Cyc). With immunotherapy, it truly is a case of choose your poison:) But for my family history, diabetes is more likely than heart issues, so it works for me.

@taco
I had a situation once when I was experiencing dizziness, due to an additional blood pressure medication, my primary care doctor suggested that I take it in the evening instead of morning, and it eliminated the dizziness.
I wonder whether you could take the prednisone in the evening instead of morning?

@grettac
My long time spouse with the kidney transplant over 7 yrs ago, his doctors are hesitant to reduce or change his immunosuppressants drugs. The first 14 months after transplant he had rejection, low hemoglobin issues (I gave him a shot 3X a week for that 8mos) and later CMV then six weeks before Covid19 arrived, he had his first good blood work labs . He has many negative side effects from the immunosup drugs especially with Tac. Mood swings, depression, gut upset, glucose plummeting though food and insulin are correct, fatigue-low energy, 24/7 body tremors and more. All his nephrologists know all these issues causing his low quality of life since receiving the organ to present time and have no suggestions to improve things. THe kidney functions alright GFR around 38 . He has yet to have a day of not feeling lousy. Long ago he had chemo 9 months and the light at the end of the t funnel arrived and he fully recovered; but this transplant journey ,so far has not seen "light" as we had hoped. I feel we are stuck. I am doing more of everything a household encounters to run. We live isolated still. From my academic research studies, quite a few recipients of a kidney transplant and on Tac, cellcept and Prednisone have very similar issues my spouse is having nonstop. We exist and don't live anymore for years. We are stuck. His doctors only focus on the organ working not quality of life is very low. I am so mentally drained coping with all this but I'll stick by his side. No matter what.

@maggieinfp My spouse on these meds also gets his skin bruised super easy in his late 60's and his skin is very thin too. He is over 7yrs recipient and on these meds. I hope you find the answers to help your spouse.

Thank you all for sharing your personal experiences. My husband will be meeting with his nephrologist and kidney transplant team this summer. I will let you know if they allow him to change his immunosuppressants in order to reduce side effects.
Heartened to hear that Stephenird has had a successful outcome off of prednisone.
Dotygl, I’m feel for you. Yes, our life quality is not the same but it is better than the exhaustion/fatigue he felt pre transplant. As someone said, choose your poison. But it’s certainly not a walk in the park, especially when factoring in the natural effects of aging. But I’m grateful for the pleasures we do have and my husband is a true warrior, always fighting for improving his life.

@dotygl
I am so sorry to hear this. I will share I did not feel good on Tac either. i switched from Tac to modified Cyclosporine 4 years ago and do better on that drug. It is a delicate balance - quality of life vs health of transplant. I pray you are able to communicate clearly and your physician can listen and also communicate clearly, so you may find the best answer for your husband❤️

@dotygl - I hear your concerns and it sounds like you are feeling pretty defeated. I, too, wonder about whether or not my life will ever approach something close to normal. I encourage you and your husband to keep talking with the docs about your quality of life. Are these Mayo docs you are seeing? There are alternatives to immunosuppression. Best to you.