Hi everyone, thanks for having me in the group. I had my second kidney transplant a little over a year and a half ago. My kidney function has been good and the FSGS that took my first transplant and my native kidneys is in remission for the first time since I was diagnosed at 4 (I'm 29 now). I feel incredibly blessed. Unfortunately I have not been well since the transplant, and I don't mean mild unwellness, I mean I've been nowhere near returning to work, haven't had a hemoglobin above 9.6, have lost half my hair, feel terrible mentally and physically every day.
Things got a lot worse at the end of May though, I very quickly started to have very scary symptoms that we couldn't explain- extremely low blood pressure, heart palpitations, severe headaches, dilated pupils, altered mental status, confusion, etc. My creatinine remained stable through this time and my Prograf trough levels were just barely in the normal range, even a bit low sometimes. I was taking 7mg in the morning and 6.5mg at night. I've also been on roughly that dose since my first transplant, so about six years straight. We found out my aldosterone level is undetectable, which could help to explain the lowered blood pressure. I was also having very severe pain in my transplant, radiating to my hip and back sometimes. We did an echocardiogram, my heart looked fine. An ultrasound on the kidney looked fine and again, my labs are stable. But we decided based on my symptoms and the low aldosterone, and maybe even the need for Procrit despite the good kidney function, that I have Prograf toxicity. My nephrologist wanted to switch me to Belatacept but I don't qualify because I don't have EBV antibodies, so my lymphoma risk would be too high. We've reduced my dose significantly and I've noticed some improvements, in the headaches and the kidney pain mostly. But I'm still experiencing extremely altered mental state, severe exhaustion, low blood pressure, and when I fall asleep at night it feels like I'm going to die, it's the deepest sleep ever and not in a good way. There are points in the day after I take my meds that I nearly pass out, almost like narcolepsy. I am now at 1mg twice a day, in addition to 180mg Myfortic twice a day and 4mg Prednisone. I am about ready to stop the Prograf altogether. I have felt sicker in the past two months than I have probably ever felt in my life, and that is saying a lot. I've felt several times like I'm going to die. I know Prograf toxicity, if bad enough, can lead to seizures and coma and I believe I've felt on the brink of this at times.
My nephrologist has suggested Everolimus as an alternative to Belatacept, although he doesn't seem as enthused about it. He warned me about mouth sores and a dangerous respiratory infection, as well as the Everolimus "complimenting" Prograf toxicity, i.e. it can worsen it if taken together. There is no way I am willing to begin a new drug until I feel recovered from what the Prograf is doing. I am alone all day long until my housemate gets home from work and I have no family nearby, so needless to say my anxieties have been exacerbated by a lack of support and feeling of safety. I understand the risks of "noncompliance" but at this point I feel I have done my best and have no choice, truly. I have read case studies of people with Prograf toxicity who also did not have improvement of their symptoms until they stopped the drug completely. My nephrologist is aware of all of this and seems to understand my decision and my reluctance to try Everolimus. I am desperate for even one day of feeling normal. I did not get a transplant to feel sicker than I felt before the transplant in many ways, even though I am eternally grateful to not be on dialysis. I feel sorrow every day that I have received this gift of life and the miracle of FSGS remission and I still feel so bad. I am praying that my kidney will be okay. My creatinine has only improved since we've lowered the Prograf. Both my transplants have been perfect matches and I've had no DSAs to either thus far, and I'm praying that maybe this bodes well for my kidney, that the Myfortic might be enough, although I realize there is no literature to support this. Throughout this experience (not to mention my entire life experience) I have learned how little is actually understood about immunosuppression, including its metabolism, something my nephrologist has readily admitted to me. I don't really have a lot of faith in "the literature" anymore.
I am just wondering if anyone has gone through Prograf toxicity and can shed some light on what helped or how it got better, just your experience in general. I feel very alone and scared. Thanks so much for reading this.