Kidney Transplant - Side Effects of Immunosuppressants

I have a great deal of experience with side effects from tac and mycophenolate. I would just encourage you to open up communication with your Mayo docs about your concerns. Sooner than later. If you don’t live in the Phoenix area, video visits are always an option. Best wishes to you!

Anyone here have experience addressing these side effects?

@taco I am a liver and kidney recipient, and haven't exprienced the platelet drop that you describe. At 17 years post transplant, I am taking Tacrolimus and Mycophenolate with lowered doses than when I first received my transplant. However, I have on several occassion over the years experienced a return of the shakiness, difficulty concentrating or focusing on what I'm supposed to be doing, and feelings of anxiety that are not my normal behavior. Sometimes my labs are repeated, and sometimes my Tacro dose has been lowered (with a repeat lab).
It is worth remembering that each of us is different and will react differently to our medications. I see that you want to discuss this with your doctor. When have you last discussed this with your doctor? How often are your labs drawn?
Why don't you contact your transplant team now if these side effects are interfering with your daily living?

@rosemarya Thank you for your response! I have a treatment team of nephrologists, neurologists, hematologists, and urologists and get regular blood work. Thank you for asking. People are different, I am just seeking information about what others have experienced and done to address these side effects. I initially had the anxiety symptoms. No one suggested lowering the tacrolimus. I just learned that mycophenolate can causes pancytopenia researching the subject. I am not a doctor, I am just exploring options and getting second opinions. My team takes a cautious approach when it comes to adjusting these medications, apparently. I presume your tacrolimus level is below 5-7 ng/mL?

My husband (83years old) had a kidney transplant 4 years ago. In the past 2 years he has had great difficulty with his skin tearing and bleeding from just a slight bump into furniture or a car door. He has wounds all over his arms and legs. He is taking prednisone, cellcept and tacro for immunosuppression. He is hoping the prednisone can be reduced because all his lab work is good and his egfr has held steady at 58. Would be grateful to hear from any kidney recipients who have been able to reduce immunosuppressants after a few years of stability. Thank you.

@grettac Sorry to hear about the skin tearing and bleeding that your husband is experiencing. You are in my thoughts and prayers. What do the doctors think causes it? My research indicates that low platelets caused by mycophenolate might be a factor. Do you think the prednisone is the cause?

Thank for your kind words. Yes, it is probably the prednisone in addition to aging. Since his skin condition is deteriorating, we are hoping that transplant team will consider reducing the prednisone. I was wondering if others on Mayo Connect have had prednisone decreased after several years of stability post kidney transplant.

I have been taking 5 mg of prednisone in the morning since my kidney transplant in 2022. I experience anxiety especially upon waking and then it gets better as I go about my day. My therapist thought that the prednisone I was taking might be contributing to this. My medical team disagreed however, advising that 5 mg was too small a dose to cause this side effect. One doctor even told me that if I thought I was stressed out on prednisone, this would pale in comparison to the stress I would experience if I stopped and my transplant kidney was rejected! This convinced me to stay on 5 mg.

@taco Am 20 months post and I have the exact
same meds and the exact same problem. My arms look like I was beaten. So far my legs are Ok (or I just don’t bump them as much)
I feel for your hubby ☹️

Thank you for your responses. If we get any support from docs on reducing prednisone, I’ll certainly post it. Husbands nephrologist had said that you are trading one disease for another with a kidney transplant. Of course he supported the transplant and at the time he said this we were somewhat perplexed. But the many side effects of the immunosuppressants are definitely no walk in the park. BUT much preferred to a failing kidney or dialysis.