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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.

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Replies

  • Sorry about my late reply but I am new to this site.i had a kidney transplant over 9 years ago. I am on program 1 mg twice daily with a trough averaging 5 , cellcept 250 mg twice daily. In the first 2 years after my transplant I had several cellcept trough test levels taken and cellcept dosage dropped accordingly. I had compath induction at surgery never any prednisone. My surgery was done at mayo clinic. Hillary I don't know if you are still on Imuran but my dermatologist says it has a greater risk of developing skin cancer compared to cellcept so keep a close watch out for that. Good luck!
  • I was told that I had prograf toxicity, but not truly sure. I also, have not been well since transplant, low magnesium, D, A, Iron etc. I transferred from the generic with much better results but not good enough. My hair is still falling out my whole body hurts but the magnesium infusions made a HUGE difference, have you checked your magnesium? You are absolutely right about not trusting the information or the doctors completely. You must advocate for yourself!!! Go with your instinct but get your blood test and research each level and medication, this is how I discovered many of my problems. I know it it so difficult to be sick and have to do all of this work. 

    I don't know if you should drop the prograf, consult with other doctors. I went to two well known transplant hospitals to get answers. They vary somewhat but information from your research combined with the doctors may help greatly. I have got worse each month on Prograf and I am on extremely low doses they tell me, 5mg prograf total and 750 total Cellcept daily. I am very sensitive to medication and I believe that is why I have had great kidney function on these doses, but I feel awful. I am scared to switch to Belatacept as I was hospitalized with infections lately but I don't know if I have a choose.

    My best advice is to go to another transplant clinic with all of you medical documentation. I just called Mayo Clinic and made an appointment for myself but it depends on your insurance. Look online at the ratings here is one site, http://health.usnews.com/best-hospitals/rankings. That said, I did not have any luck with the Mayo Clinic nurse coordinators and the doctors have seemed to have changed. Maybe find one close to you, or one doctor at UCSF I can recommend is Debroah Adey. 

    Best of luck to you and I will pray for you. I would go to other doctors until I figured it out or ran out of money. Take good care of yourself and be kind to yourself, your not crazy your ill.

  • Hi Hilary,
    My boyfriend has his kidney almost 2 years now, and he is getting vorst every day, he cant stop sleeping, wakes up in the morning and he feels like he never slept. His blood work is pretty good. Cr 1.1 BUN 17. Blood level of Prograf 8.0, and I make him to drink a lot of fluids, like 4 liters a day, he wants to go back to the gym, at least on a treadmill and he cant make it, his heartache is debilitating too. He is not on Myfortic any more, prednisone 5mg a day, Prograf 6 mg a day. What kind a test we should run to find out his issue, I fell helpless, he is not able to function and just finish master degree, but I dont see him going back to work, he said too, that he felt better on dialysis machine then now. Please if you have any ideas let me know.
    • Renata,

      From what I've read here, 6mg/day Prograf and 5mg/day Pred is not considered "a lot".  Quite normal, as long as his Prograf trough is not too high.  It's possible he may just have an issue wtih Prograf even at a low dose.  

      Other than that I can't offer much.  But it does sound like something needs to change.  

      Blessing to you and yours.  May he be well!

    • Hi Renata,

      I'm sorry to hear your boyfriend is in a similar place. Is his main complaint exhaustion or does he have other issues as well? Is he anemic? I know my Prograf level is kept around 5, it was 5.2 last time we checked, though I have to take 14mg a day to keep it there. I would think I'd feel a lot worse with a level of 8. Different transplant centers have different protocols, but I suspect maybe they want him at a higher level because he's not taking a third drug like cellcept, myfortic, or Imuran. Maybe adding a third drug to reduce the Prograf would help? I have no idea though. I think my main recommendation would be that he see an endocrinologist and get his DHEA and testosterone tested, as well as ACTH and morning cortisol. His adrenals probably aren't producing adequate hormones if he's been on prednisone for two years. I found out a couple weeks ago my DHEA and testosterone are extremely low from adrenal insufficiency, and these hormones are essential for energy and well being. Why nephrologists don't anticipate this and plan for supplementation ahead of time is beyond me. They have no idea what long term prednisone does to a person, even at small doses. I hope he's able to figure this out and get some relief. Good luck to you both.

  • Hi everyone, sorry for not checking in sooner. I'm okay. The rejection has been reversed, thank God, and I'm back on prograf, imuran, and still prednisone, which I'd never stopped. I had to stop cellcept because we did a trough level and found I had a toxic level of it in my blood, even at a small dose. I can't metabolize it for some reason. it seems likely the myfortic may have caused toxicity, not prograf. wish they had considered that earlier but I don't think it's a very common thing. I had to move back home in October to live with my mom as I was so incredibly ill. I am doing a lot better now, no more debilitating headaches and my blood pressure is no longer dangerously low, no more breathing problems and the tachycardia has also gotten better. it seems like in addition to toxicity issues I was have dysautonomia/POTS symptoms, maybe caused by the toxicity, although this is also common in people with adrenal insufficiency, which I have from long term prednisone use. anemia is still an issue, hemoglobin has been 8 for a long time now. also having hormonal issues from prednisone aside from cortisol. still struggling basically but doing a lot better than a few months ago. thanks for checking in everyone, I hope you're all well. 

    • Thank GOD! get better soon. Make a list of what should be checked by your doctor and keep it handy so you can remember. We all need a complete list of blood test and others. I was not tested for EBV although extremely ill after transplant, I was later told I had Lymphoma, without testing for it, because they discovered the EVB infection, which made me so ill, even gave me arthritis. I did not have lymphoma, thank GOD. It could be one test that explains everything or a ton of little things.

      Hang in there

    • So glad to learn a correct combination is working for you.

      Stay Well!

    • Dang girl, I was starting to think the worst!  So glad you're doing better and your Docs have figured out what was causing so many problems.  

      I'd not heard that Myfortic could be toxic.  

      You get strong(er), stay well, tell your Mama "hi" for me, stay in touch.  We want to know how things go.  Plus, other folks need your insight.    

      Blessings!

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