Tacrolimus User Reviews & Ratings

• Anonymous
• October 31, 2009

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "My daughter had a liver transplant almost 15 years ago. After 6 months, Prograf was the only medicine she was taking. Has had NO setbacks, no problems. She has given birth to 3 beautiful, smart children with no problems or side effects. Thank God for Prograf. She is on 2 mg twice a day."

• Anonymous
• Taken for 2 to 5 years
• July 13, 2022

For Organ Transplant, Rejection Prophylaxis "My Dr. increased Prograf from normal 2 capsules twice per day to 3 twice per day, I immediately began to lose my hair by the handfuls. When she reduced my dose back to 2 caps per day, hair loss stopped. Have others experienced this problem?"

• Ste...
• Taken for 1 to 6 months
• February 24, 2019

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "I just had the worst time with this medication! I had severe diarrhea, we are talking 20 times in one day. It gave me the worst migraines. They would last for days. They would cause me to vomit. When I was in the hospital, they would give me IV pain meds, and I still had the crippling migraines. All I wanted to do was lay in bed. It worked great as preventing rejection. However, I felt so sick I was not living. I lost a ton of weight. I was never hungry, and when I did eat, it all just came right back out. I had a lot of edema in my legs and feet. I begged to be on something different and switched to cyclosporine. This medication was just plain awful. I'd rather live my whole life on dialysis than to ever take this again!"

• NM8...
• January 8, 2011

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "I am a grateful liver transplant recipient. 4-11-08. I have been taking Prograf and Myfortic since transplant with very few side effects that I am aware of. I have returned to work for 12 months. The only side effect that I have a problem with is sleeping. I am a contractor, and many times it is a manual type of job, so I do need sleep, which I only get 5 hours/night if I am lucky. I feel in time this will take a negative effect on the transplant. All liver functions and blood work are good. I go to the transplant clinic semi-annually. The hepatologists are opposed to prescribing me any sleep aids."

• Anonymous
• June 19, 2008

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "So far, so good. Dosage has been reduced tremendously since my liver transplant 7 months ago. I have had very few side effects, and the capsules are small and easy to swallow. I started at 18 caps/day and now down to 3/day. Be sure to follow your doctor's orders and take your medicines on time. I use a Timex Datalink watch and set 2 alarms for each dose to reduce the chance of missing a dose."

• Anonymous
• April 30, 2008

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "Liver transplant 5 years ago. No rejection. Generally comfortable drug. I have experienced small skin cancers, easily treated, no problem. I itch from time to time, not objectionable, and I don't blame it on the drug. Generally thankful for this drug. I am careful about infections because of reduced immunity. Thank you."

• BIN...
• November 14, 2009

Prograf (tacrolimus) for Organ Transplant, Rejection Reversal "I have taken this medication for almost 10 years. I am a post-liver transplant patient. I have experienced no rejections. Have had minor skin cancers removed several times. My pharmacy now wants me to use the generic, I assume because of the costs. I thank God that this medication has been so successful for me and am very concerned about the generic version. I guess I feel if it'll work. I feel that this is not to be an option I can afford to take."

• Ash...
• Taken for 5 to 10 years
• March 8, 2019

For Organ Transplant, Rejection Prophylaxis "I despise tacrolimus! It's caused me to go on insulin, whereas I was on pills first. I shake often. And worst of all, it's destroying my kidneys. It's hard on that organ. I'm 9 years out from a cystic fibrosis double lung transplant, and I truly hate this drug. If I ever need a second transplant, I'll think twice because I know what this program has done to me."

• Ann...
• August 5, 2009

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "I started taking 3 mg/day Prograf almost a week ago for my heart transplant. I was on cyclosporin but was having lots of muscle pain and cramps from the cyclosporin. Since starting the Prograf, I've been itching non-stop. It's apparently one of the side effects. I've also gained some fluid in my legs and hands. Another side effect. I hope the itching goes away soon, or I'll have to switch to something else."

• mph...
• February 25, 2009

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "I received my liver transplant 4 years ago and started with 6 x 1 mg caps/day. It has been reduced to 3 x 1 mg tabs/day since then, and I have had no episodes of rejection. Prograf seems to do the trick. Love it. I don't know if this is a side effect from taking Prograf, but I have gained weight over the course of 4 years."

• Anonymous
• February 7, 2009

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "I have been taking Prograf for 3 years now. When I first got my kidney transplant, I was taking 6 mgs a day. Now I'm down to 3 mgs a day. I have had no reactions from the drug. I thank God and my brother for the second chance at life."

• May...
• Taken for 1 to 2 years
• June 14, 2017

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "Itching was bad in lower legs, especially my ankles, for a few months after liver transplant in June 2016. I had hand trembling, where it was hard to write or hold things steady, like utensils, for several months. These cleared up about 3 months out from transplant. Also, though lesser in degree, was dizziness, confusion, tingling in legs, prickly feeling in legs, fatigue, loss of taste, urination about every hour at night. These decreased or ceased after 4 months. I have put back on weight (40 lbs) that I needed to put on and am now stable at a healthy weight. Overall, taking Prograf now, one year out, is good. Though I am having trouble sleeping through the night. I wake up around 3 am and do not get back to sleep until 5-6 am."

• Bri...
• Taken for 2 to 5 years
• August 28, 2024

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "Had two weeks to live before I received my new liver 2.5 years ago. Currently take 1 mg in the morning and 2 in the evening. My side effects are bad joint pain, fighting weight gain, very hard to lose. Ongoing anxiety. Hey, my feet hit the floor in the morning, so I have another day. Every day is great thanks to my unknown donor. Thank you."

• Anonymous
• June 14, 2009

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "I am 4 1/2 years post liver transplant. Take 2 mg 2 x daily since the initial year. Not aware of any particular side effects. Have had no incidence of rejection as far as I know. Overall, the drug appears to do what it is supposed to do, thankfully."

• gin...
• Taken for 1 to 2 years
• April 29, 2016

For Organ Transplant, Rejection Prophylaxis "I read where Prograf does not work well on people of color. I started with 12 pills a day, it weakened my entire body. Now on 8 pills a day, every so often it weakens my body. Can't stand for long periods of time, I get tired and feel very weak. Right now, searching for an answer, Dr. contacted today."

• sur...
• Taken for 2 to 5 years
• October 14, 2019

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "I've been on this since September 1, 2016, as an immunosuppressant for a kidney transplant. So far, it's working well. Side effects include continuous stomach distress, usually ranging from mild to moderate, with occasional severe flare-ups; mild tremors; mild blood glucose elevation; occasional mild numbness in hand. For me, the side effects are well worth keeping my kidney from rejecting."

• 1Dr...
• November 28, 2017

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis "All praises to Prograf. I have not had any problems with rejections. Liver transplant date 2011. I’ve had some itching, and my sleeping is awful. But my main problem follows. I have developed NODM (New Onset Diabetes Management), and I simply cannot lose weight, instead, I am gaining and cannot lose. I exercise at least 1 1/2 hours daily, my diet is excellent, and I'm a model patient. Yet my post-transplant diabetes is out of control. I am hovering around 7.0, and I am literally killing myself exercising, eating right, taking meds correctly, etc. Been seen by four endocrinologists... more oral meds and more insulin. Just this week, I’ve been told to take Glipizide maximum daily dose, Novolog insulin, 9 units x3, Novolin 28U/10U, and Jentadueto."

• PJa...
• Taken for 2 to 5 years
• May 24, 2020

For Organ Transplant, Rejection Prophylaxis "I’ve experienced that different manufacturers can affect your tacrolimus (Tac) levels in bloodwork. I have to ask the pharmacist for brand-specific Tac. I’ve been on it 2 1/2 years post-liver transplant and have had no problems except high levels when they changed the manufacturer at the pharmacy."

• Nak...
• January 20, 2018

For Organ Transplant, Rejection Prophylaxis "I started taking tacrolimus 11 years ago. For the first 2 years, no problems. But then I started having reactions to foods, breaking out in bright red rashes, super hypertensive episodes, like 190/100. Shaking, itching, tongue burning, which goes from bad to bloody awful some days. I start choking, unable to swallow, and a severe rash that came on my face. Had to call the ambulance. It has completely changed my metabolism, where I can't take any other meds without serious reactions."

• ste...
• April 11, 2019

For Nephrotic Syndrome "I am now 57 years old and I had a kidney transplant 5 mths ago, and am now on tacrolimus. However the question is about nephrotic syndrome, which I previously had from the age of 18 mths. I was mainly treated with varying doses of the steroid prednisolone for circa 50 years. However in the 80's I received cyclosporin, another powerful anti rejection drug, which seems to be used less often today, in favour of tacro. Unfortunately a side affect of years of taking cyclosporin was that it increased my creatinine levels (damaging the kidney), and when levels rose to around 150 they stopped it, and resumed steroids, then at a much lower dose (5mg instead of 20 daily). The point is that 'for me' it was a tricky decision of how long to stay on the cyclosporin, and the damage it causes to creatinine levels, against increased amounts of steroid. Eventually almost 30 yrs later further damage made it inevitable that I needed a transplant, that was received from my step Dad). I'm in UK so our great NHS covered my costs."

• Dav...
• Taken for 10 years or more
• April 24, 2018

For Organ Transplant, Rejection Prophylaxis "Tacrolimus (aka FK506) saved my first renal graft in 1994. Second renal graft in 2016 and tacrolimus still working great. No side effects noted in 20+years of use except if dose gets to high some hand tremors."

• Wea...
• September 19, 2017

For Crohn's Disease "I was in the original FDA FK506 study as a pre-transplant patient (Primary Sclerosing Cholangitis ). I had been given 6 yrs to have a liver transplant. My liver #'s were 3-4 digits and I was becoming very ill. My dosage was stabilized at 3 mgs and my numbers have decreased to normal. I have been on this medicine since 10 '92 and still no transplant. The medicine has slowed the progress of PSC drastically. I see it is used for Crohn's, but nothing is listed for liver diseases. Did they ever evaluate the trial results from the early 90's? My current insurance will not approve the drug for me for this reason. This might be the result of the trial www.ncbi.nlm.nih.gov/pmc/articles/PMC2982698/ or is a similar one."

• TKK...
• February 10, 2012

For Organ Transplant, Rejection Prophylaxis "I have been using Tacrolimus for the past 2 years. Had a liver transplant on 1 Aug 2009, was on Prograf, but I live in Kenya, and it is difficult to find Prograf in the local market, so I went generic. I started out on 6 mg twice daily, I'm down to 4 mg twice daily. There's been no difference for me between the Prograf and the generic version, but I have put on weight."

• mor...
• April 10, 2013

For Organ Transplant, Rejection Prophylaxis "I received a modified multi visceral transplant in 2008 due to a desmoid tumor, I had this surgery performed at U.P.M.C of Pittsburgh where I was blessed by God to have had amazing transplant doctors. I was on Prograf for the longest amount of time and had since been switched over to the generic. I had noticed for quite a while however that I do suffer from tremors and lately I have been having the feeling of eye twitching which is slightly annoying to me but I can not complain as without God and my medicine I would not be here to share this. I have heard of long term conditions down the road from others that I have come across and Lord willing that will not be my case, I have become diabetic. I hope this helps."

• Anonymous
• Taken for 1 to 6 months
• May 3, 2017

For Crohn's Disease "I have an autoimmune condition AntiSynthtase Syndrome, ILD and Dermatomyositis .I have been on Tacrolimus for approximately 2 months. I was on it previously as an interim drug before I received Rituximab and before that I had nine rounds of CYclophosphamide. I have also tried Mycofenelate whilst I was have Rituximab."