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

I had a liver transplant almost 6 years ago I am on tacromilis 1mg every 12 hours. I will experience headaches every once in a while but not as much as before. Hair loss is probably my main side effect - I was lucky I had very thick hair at one time.

I am so grateful that I came across this site. I had a heart transplant and also a pancreas transplant (which I lost). I have suffered from joint pain, hair loss, and nocturia (something I never even knew happened because of anti-rejection meds). I have been on tacrolimus, mycophenolate, and prednisone for the past 7 years. Now they have added the sirolimus because I was recently diagnosed with CAV. Since they added the sirolimus, I am unable to sleep at night, shaking, and anxious. It is comforting to know that I am not alone. Thank you all so much for sharing and for your wonderful insight. Reading your posts has helped me tremendously.

Hi. Jackie here. My liver transplant was 10/20/20
Went thru the mill with medication.i too dropped tacrolimus I am on sirolimus 3 mg a day, just in morning my level is good I had to watch my creatine levels
But as today now I have to worry about my GFR numbers for the kidneys
I need to see a kidney Dr my last number was 43.....anyone else??? What the f....now I have to do research. I am not diabetic and b/p is under control it is ok.when I came home from my surgery I was in hospital 2 months my hair also acted up but I started taking biotin and it helped. I don't look like Farrah Faycett but it is ok not bad ..well any info someone can add always appreciate. Kisses to all

I"m a liver transplant patient 15 years out. 3 years ago my transplant doctors in NY said I could try no anti rejection meds and to this day I have not rejected and no longer have side effects of meds. Slowly weaned down. I am lucky because I was a good match." I don't recommend trying this without your Drs. approval" . The liver is the largest organ in the body and has the best chance of not rejecting after at least 10 yrs on immunosuppressive drugs!

It’s been 2 years since my liver transplant during the ordeal I lost a lot of my hair but now use Biotin pills and shampoo and it’s back for being 65 I just am on tacrolimus and prograf and high strength magnesium, Keppra not too bad I get headaches because I had a stroke and brain bleed right after my 13 hour surgery

It’s been 1yr and almost 2
months since my transplant. I also had a right sided stroke and my pituitary gland disappeared post transplant. The meds are crazy still!! Anti rejection, anti seizure, anti high blood sugar, and so one and so one. From stage 4 diagnosis to transplant was 7yrs 5 months. Which was a battle in itself with 50 EGD’s and 9 paracentesis , and the crazy bilirubin encephalitis trips were too numerous to count. I thank my family for seeing me through this. The entire medical professional staff for their hands on care. But mostly I thank my Lord and Savior for blessing me once again with life!

God bless you! Keep fighting the good fight!!

I only had 7 months from start to finish it can go quick , Jesus stood next to me the whole time and still does my hospital many of the doctors were Christian and prayed with me daily all the way into the operating room plus I had a very diligent prayer team all over, it’s gets better but it’s a slow recovery I’m discovering

I have been on 5mg, sometimes up to 20mg, since I was 16 years old. I understand your troubles. I have no side effect from 5 mg. I am a liver transplant patient.

I also had my transplant almost 38 years ago. I was number 90 and 98. Still doing really well. I think my mayo doctors are even a little shocked.