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User Reviews for Tacrolimus

Also known as: Prograf, Envarsus XR, Astagraf XL, Hecoria

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

Condition Avg. Ratings Reviews Compare
Organ Transplant, Re...tion Prophylaxis
8.1
   
33 reviews 14 medications
Organ Transplant, Rejection Reversal
8.0
   
2 reviews 2 medications
Nephrotic Syndrome
7.0
   
2 reviews 42 medications
Crohn's Disease
6.7
   
3 reviews 14 medications
Summary of Tacrolimus reviews 8.0 40 reviews

Reviews for Tacrolimus

stexx 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."

7.0
   
Ashley · 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 in 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 program has done to me."

1.0
   
Steph · 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!"

1.0
   
alexus96 · Taken for 10 years or more October 18, 2018

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "No problems of liver reject from when I use Prograf (Tacrolimus), but I have some collateral effects like alopecia and tremors of hands and sometimes I feel buzzing in my ears. 9/10 !"

9.0
   
Sendy July 7, 2018

For Crohn's Disease: "tacrolimus has too many real side effects. Would the doctor prescribe this to someone they love in their family? I can't believe doctors prescribe this stuff to patients. This stuff is bad. Period."

WD40 · Taken for 6 months to 1 year May 24, 2018

Envarsus XR (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "Been using envarus XR for over a year. Started at 1.75 mg and now at 1.5 mg. The most notable side effects are the tremors. Hands noticeably shaking. I'm adapting."

8.0
   
David · 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."

9.0
   
Neprotic syndrome · Taken for 5 to 10 years April 20, 2018

For Nephrotic Syndrome: "My son has been on tacrolimus for 5yrs he is 14 and has Neprotic syndrome never( had a transplant) and his urine always shows that he has protein leaking when results come back. When Dr sees him he looks fine.but when the labs come back they're not good. I read all the reviews and it looks like you all had transplants and it helps . I cant understand why this isn't working for him. The pills get bigger and smaller and its the same tacrolimus? Can anyone tell me if its the size of the pills ."

Nakirallyn 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 ."

3.0
   
1DrMadison2 November 28, 2017

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "All praises to program. 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 HRS 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 4 Endocrinologists....more oral meds and more insulin. Just this week, I’m been told to take Glipizide maximum daily dose, Novolog insulin, 9 units X3, Novolin 28Us/10Us & Junevia"

9.0
   
Weavr 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."

10
   
Mayoclinic patient · 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 thru the night. I wake up around 3 am and do not get back to sleep until 5-6 am."

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."

7.0
   
ginger sue · 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 weakened my entire body. Now on 8 pills a day, every so often it weakens my body. Cant stand for long periods of time, I get tired and feel very weak. right now searching for an answer, dr. contacted today"

10
   
milesjp · Taken for 1 to 6 months September 1, 2015

Prograf (tacrolimus) for Organ Transplant, Rejection Reversal: "Standard Postoperative Organ Anti Rejection / immune system suppressant treatment"

8.0
   
jddsix July 8, 2014

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "Some side effects...they've been manageable. Keeping a positive attitude and having a support group has been beneficial."

7.0
   
dondient · Taken for 10 years or more March 7, 2014

Hecoria (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "Easy to take haven't felt any side effects. No secondary infection. 12.5 years experience used with CellCept and for a while with Prednisone."

10
   
r00sty July 15, 2013

For Organ Transplant, Rejection Prophylaxis: "Renal transplant 2000. No problems besides slight tremor in my hands. Cyclosporine caused terrible reactions for me, immediately post transplant. Had to have 6 plasma apheresis rounds to clear the cyclosporine and then smooth sailing on tacrolimus."

10
   
morbius4510 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."

7.0
   
Anxiety321 January 26, 2013

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "Prograf seems so far to be a great Immunosuppressive medication . Bad - tremors and anxiety."

7.0
   
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 6mg twice daily, I'm down to 4mg twice daily. There's been no difference for me between the Prograf and the generic version... but I have put on weight."

8.0
   
Anonymous December 21, 2011

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "Started taking Prograf in July of 2011 for my heart transplant, except for some slight itching and for a little fluid in my ankles, this drug has worked wonders. "

10
   
Anonymous November 23, 2011

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "I'm taking Prograf since 2000. Was 7 seven back then, now I'm 19. Still no side effects, just wanted to check if there are any long term side effects."

10
   
NM8066 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 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 5hrs/night if I am lucky. I feel in time this will take a negative effect on transplant. All liver functions and blood work is good. I go to transplant clinic semi-annually. The hepatologist are opposed to prescribing me any sleep aids. "

JJOHN JON September 21, 2010

Prograf (tacrolimus) for Organ Transplant, Rejection Prophylaxis: "Liver transplant 8 years ago. No Problems."

9.0
   

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