TACROLIMUS - ORAL

I'm writing for my husband who had a liver transplant in 2015. He was put on Prograf and for a few days did well. However, when the docs upped the dosage, he went into full blown psychosis No one told us this might happen and when we went to the ER for help, twice, no one owned up to the fact the Program was causing it. Only two nurses were honest with us - said that "we see this all the time." They said that when cyclosprine was used, they never had the problem. I finall go the docs to change him to cyclosporine and he's been fine ever since. But I can never forgive them for putting him and us through a very dangerous period when he went crazy and pulled the panel off the bottom of the sink and hit himself in the head with it. I was told later by a nurse practitioner that the docs knew full well he was having a prograf reaction but wanted him to stay on it as long as he could in the beginning. The toll this took on me, his son and my husband was horrible. It was unconscionable that I had to yell and scream for them to take him off that drug. My husband even had a seizure in the ER during this time, but they told me it was a not a seizure. I worked in health care at the time and I knew a seizure when I saw it. So, patients and family members: BEWARE Prograf.

I'm writing for my husband who had a liver transplant in 2015. He was put on Prograf and for a few days did well. However, when the docs upped the dosage, he went into full blown psychosis No one told us this might happen and when we went to the ER for help, twice, no one owned up to the fact the Program was causing it. Only two nurses were honest with us - said that "we see this all the time." They said that when cyclosprine was used, they never had the problem. I finall go the docs to change him to cyclosporine and he's been fine ever since. But I can never forgive them for putting him and us through a very dangerous period when he went crazy and pulled the panel off the bottom of the sink and hit himself in the head with it. I was told later by a nurse practitioner that the docs knew full well he was having a prograf reaction but wanted him to stay on it as long as he could in the beginning. The toll this took on me, his son and my husband was horrible. It was unconscionable that I had to yell and scream for them to take him off that drug. My husband even had a seizure in the ER during this time, but they told me it was a not a seizure. I worked in health care at the time and I knew a seizure when I saw it. So, patients and family members: BEWARE Prograf.

I am a 22 year survivor of a liver transplant. I have been on this product for the entire time. HOWEVER I have reduced my dosage to zero over the last 3 years. I had just about all the symptoms, pain, weakness, insomnia, digestive issues (diarrea). I could go on and on but we all know what it does. Constant bloodwork AST/ALT during this time has shown the my liver is doing great with no issues. Other than feeling a million times better being off this stuff, my Doc is amazed that there are no issues. We still monitor the usual things and stay on top of it . After 22 years I know my body, and I know I have regained my life. I just had my 66th birthday!! I have a great Doc that worked with me and I DO NOT recommend doing what I did unless you have a GREAT Doc to help through it, but I would say try to talk to the Doc about taking baby steps in reducing your dose even a little bit. In 1999 when I had my transplant I was taking 8mg daily. After one year of suffering all those side effects, we reduced the dosage to half 4mg. After 5 years we went down to 2mg and I stayed with that dose for ten more years. The last 3 years its' 1mg a day. Then 1mg every other day then once a week and now ZERO. Again, I have a tremendous Doc who worked with me and the GI the entire time. DO NOT DO THIS YOURSELF, IT TAKES A GREAT DOCTOR TO HELP ONE THROUGH THIS, CONSTANT MONITORING OF BLOODWORK AND THE USUAL CHECK UPS MUST BE DONE. I have a new life and my wife thinks I'm a horny teenager(almost) LOL

I'm writing for my husband who had a liver transplant in 2015. He was put on Prograf and for a few days did well. However, when the docs upped the dosage, he went into full blown psychosis No one told us this might happen and when we went to the ER for help, twice, no one owned up to the fact the Program was causing it. Only two nurses were honest with us - said that "we see this all the time." They said that when cyclosprine was used, they never had the problem. I finall go the docs to change him to cyclosporine and he's been fine ever since. But I can never forgive them for putting him and us through a very dangerous period when he went crazy and pulled the panel off the bottom of the sink and hit himself in the head with it. I was told later by a nurse practitioner that the docs knew full well he was having a prograf reaction but wanted him to stay on it as long as he could in the beginning. The toll this took on me, his son and my husband was horrible. It was unconscionable that I had to yell and scream for them to take him off that drug. My husband even had a seizure in the ER during this time, but they told me it was a not a seizure. I worked in health care at the time and I knew a seizure when I saw it. So, patients and family members: BEWARE Prograf.

I am a 22 year survivor of a liver transplant. I have been on this product for the entire time. HOWEVER I have reduced my dosage to zero over the last 3 years. I had just about all the symptoms, pain, weakness, insomnia, digestive issues (diarrea). I could go on and on but we all know what it does. Constant bloodwork AST/ALT during this time has shown the my liver is doing great with no issues. Other than feeling a million times better being off this stuff, my Doc is amazed that there are no issues. We still monitor the usual things and stay on top of it . After 22 years I know my body, and I know I have regained my life. I just had my 66th birthday!! I have a great Doc that worked with me and I DO NOT recommend doing what I did unless you have a GREAT Doc to help through it, but I would say try to talk to the Doc about taking baby steps in reducing your dose even a little bit. In 1999 when I had my transplant I was taking 8mg daily. After one year of suffering all those side effects, we reduced the dosage to half 4mg. After 5 years we went down to 2mg and I stayed with that dose for ten more years. The last 3 years its' 1mg a day. Then 1mg every other day then once a week and now ZERO. Again, I have a tremendous Doc who worked with me and the GI the entire time. DO NOT DO THIS YOURSELF, IT TAKES A GREAT DOCTOR TO HELP ONE THROUGH THIS, CONSTANT MONITORING OF BLOODWORK AND THE USUAL CHECK UPS MUST BE DONE. I have a new life and my wife thinks I'm a horny teenager(almost) LOL

I had pancreas transplant 13 months ago been on prograf only complaint I have is the shakiness, tremors in my hands.

I'm writing for my husband who had a liver transplant in 2015. He was put on Prograf and for a few days did well. However, when the docs upped the dosage, he went into full blown psychosis No one told us this might happen and when we went to the ER for help, twice, no one owned up to the fact the Program was causing it. Only two nurses were honest with us - said that "we see this all the time." They said that when cyclosprine was used, they never had the problem. I finall go the docs to change him to cyclosporine and he's been fine ever since. But I can never forgive them for putting him and us through a very dangerous period when he went crazy and pulled the panel off the bottom of the sink and hit himself in the head with it. I was told later by a nurse practitioner that the docs knew full well he was having a prograf reaction but wanted him to stay on it as long as he could in the beginning. The toll this took on me, his son and my husband was horrible. It was unconscionable that I had to yell and scream for them to take him off that drug. My husband even had a seizure in the ER during this time, but they told me it was a not a seizure. I worked in health care at the time and I knew a seizure when I saw it. So, patients and family members: BEWARE Prograf.

I am a 22 year survivor of a liver transplant. I have been on this product for the entire time. HOWEVER I have reduced my dosage to zero over the last 3 years. I had just about all the symptoms, pain, weakness, insomnia, digestive issues (diarrea). I could go on and on but we all know what it does. Constant bloodwork AST/ALT during this time has shown the my liver is doing great with no issues. Other than feeling a million times better being off this stuff, my Doc is amazed that there are no issues. We still monitor the usual things and stay on top of it . After 22 years I know my body, and I know I have regained my life. I just had my 66th birthday!! I have a great Doc that worked with me and I DO NOT recommend doing what I did unless you have a GREAT Doc to help through it, but I would say try to talk to the Doc about taking baby steps in reducing your dose even a little bit. In 1999 when I had my transplant I was taking 8mg daily. After one year of suffering all those side effects, we reduced the dosage to half 4mg. After 5 years we went down to 2mg and I stayed with that dose for ten more years. The last 3 years its' 1mg a day. Then 1mg every other day then once a week and now ZERO. Again, I have a tremendous Doc who worked with me and the GI the entire time. DO NOT DO THIS YOURSELF, IT TAKES A GREAT DOCTOR TO HELP ONE THROUGH THIS, CONSTANT MONITORING OF BLOODWORK AND THE USUAL CHECK UPS MUST BE DONE. I have a new life and my wife thinks I'm a horny teenager(almost) LOL

I had pancreas transplant 13 months ago been on prograf only complaint I have is the shakiness, tremors in my hands.

baldness and tremors

I'm writing for my husband who had a liver transplant in 2015. He was put on Prograf and for a few days did well. However, when the docs upped the dosage, he went into full blown psychosis No one told us this might happen and when we went to the ER for help, twice, no one owned up to the fact the Program was causing it. Only two nurses were honest with us - said that "we see this all the time." They said that when cyclosprine was used, they never had the problem. I finall go the docs to change him to cyclosporine and he's been fine ever since. But I can never forgive them for putting him and us through a very dangerous period when he went crazy and pulled the panel off the bottom of the sink and hit himself in the head with it. I was told later by a nurse practitioner that the docs knew full well he was having a prograf reaction but wanted him to stay on it as long as he could in the beginning. The toll this took on me, his son and my husband was horrible. It was unconscionable that I had to yell and scream for them to take him off that drug. My husband even had a seizure in the ER during this time, but they told me it was a not a seizure. I worked in health care at the time and I knew a seizure when I saw it. So, patients and family members: BEWARE Prograf.

I am a 22 year survivor of a liver transplant. I have been on this product for the entire time. HOWEVER I have reduced my dosage to zero over the last 3 years. I had just about all the symptoms, pain, weakness, insomnia, digestive issues (diarrea). I could go on and on but we all know what it does. Constant bloodwork AST/ALT during this time has shown the my liver is doing great with no issues. Other than feeling a million times better being off this stuff, my Doc is amazed that there are no issues. We still monitor the usual things and stay on top of it . After 22 years I know my body, and I know I have regained my life. I just had my 66th birthday!! I have a great Doc that worked with me and I DO NOT recommend doing what I did unless you have a GREAT Doc to help through it, but I would say try to talk to the Doc about taking baby steps in reducing your dose even a little bit. In 1999 when I had my transplant I was taking 8mg daily. After one year of suffering all those side effects, we reduced the dosage to half 4mg. After 5 years we went down to 2mg and I stayed with that dose for ten more years. The last 3 years its' 1mg a day. Then 1mg every other day then once a week and now ZERO. Again, I have a tremendous Doc who worked with me and the GI the entire time. DO NOT DO THIS YOURSELF, IT TAKES A GREAT DOCTOR TO HELP ONE THROUGH THIS, CONSTANT MONITORING OF BLOODWORK AND THE USUAL CHECK UPS MUST BE DONE. I have a new life and my wife thinks I'm a horny teenager(almost) LOL

I had pancreas transplant 13 months ago been on prograf only complaint I have is the shakiness, tremors in my hands.

baldness and tremors

I had a liver transplant when I was only two and a half years old, and have been taking prograf since day one. This medicine is hard on my kidneys, which causes me to have high blood pressure, but I am given another med to help with that. This new years eve will be my 12 year "liver-virsery" and I have not gone into rejection thanks to prograf. I must say that this med along with a few others(CellCept)(Enalapril)are the reason I'm here today.

I'm writing for my husband who had a liver transplant in 2015. He was put on Prograf and for a few days did well. However, when the docs upped the dosage, he went into full blown psychosis No one told us this might happen and when we went to the ER for help, twice, no one owned up to the fact the Program was causing it. Only two nurses were honest with us - said that "we see this all the time." They said that when cyclosprine was used, they never had the problem. I finall go the docs to change him to cyclosporine and he's been fine ever since. But I can never forgive them for putting him and us through a very dangerous period when he went crazy and pulled the panel off the bottom of the sink and hit himself in the head with it. I was told later by a nurse practitioner that the docs knew full well he was having a prograf reaction but wanted him to stay on it as long as he could in the beginning. The toll this took on me, his son and my husband was horrible. It was unconscionable that I had to yell and scream for them to take him off that drug. My husband even had a seizure in the ER during this time, but they told me it was a not a seizure. I worked in health care at the time and I knew a seizure when I saw it. So, patients and family members: BEWARE Prograf.

I am a 22 year survivor of a liver transplant. I have been on this product for the entire time. HOWEVER I have reduced my dosage to zero over the last 3 years. I had just about all the symptoms, pain, weakness, insomnia, digestive issues (diarrea). I could go on and on but we all know what it does. Constant bloodwork AST/ALT during this time has shown the my liver is doing great with no issues. Other than feeling a million times better being off this stuff, my Doc is amazed that there are no issues. We still monitor the usual things and stay on top of it . After 22 years I know my body, and I know I have regained my life. I just had my 66th birthday!! I have a great Doc that worked with me and I DO NOT recommend doing what I did unless you have a GREAT Doc to help through it, but I would say try to talk to the Doc about taking baby steps in reducing your dose even a little bit. In 1999 when I had my transplant I was taking 8mg daily. After one year of suffering all those side effects, we reduced the dosage to half 4mg. After 5 years we went down to 2mg and I stayed with that dose for ten more years. The last 3 years its' 1mg a day. Then 1mg every other day then once a week and now ZERO. Again, I have a tremendous Doc who worked with me and the GI the entire time. DO NOT DO THIS YOURSELF, IT TAKES A GREAT DOCTOR TO HELP ONE THROUGH THIS, CONSTANT MONITORING OF BLOODWORK AND THE USUAL CHECK UPS MUST BE DONE. I have a new life and my wife thinks I'm a horny teenager(almost) LOL

I had pancreas transplant 13 months ago been on prograf only complaint I have is the shakiness, tremors in my hands.

baldness and tremors

I had a liver transplant when I was only two and a half years old, and have been taking prograf since day one. This medicine is hard on my kidneys, which causes me to have high blood pressure, but I am given another med to help with that. This new years eve will be my 12 year "liver-virsery" and I have not gone into rejection thanks to prograf. I must say that this med along with a few others(CellCept)(Enalapril)are the reason I'm here today.

I just wanted to comment to the people who left comments. First if you are changed to generic in most provinces the doctor can have it changed back if it is causing you major troubles. Second to the people just started in the past less then a year. Most side effects will calm down and your hair will grow back , some times thicker. This is my second transplant--the first one lasted 28 years. I fell very blessed. May God bless you all

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

Only 5 weeks - a little edginess for first hour or two, then ok. No rejection so far.

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

Only 5 weeks - a little edginess for first hour or two, then ok. No rejection so far.

Only 3 months since liver transplant. Was on Dialysis.,but after 6 weeks. Had temp. 100.3. Found infection in blood.

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

Only 5 weeks - a little edginess for first hour or two, then ok. No rejection so far.

Only 3 months since liver transplant. Was on Dialysis.,but after 6 weeks. Had temp. 100.3. Found infection in blood.

Lots of side effects - tremors in hands and feet, but worse - loss of hair. Must do Labs diligently or else it will easily go to toxic levels and cause even worse side effects - impaired balance, major memory loss and confusion, inability to complete tasks.

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

Only 5 weeks - a little edginess for first hour or two, then ok. No rejection so far.

Only 3 months since liver transplant. Was on Dialysis.,but after 6 weeks. Had temp. 100.3. Found infection in blood.

Lots of side effects - tremors in hands and feet, but worse - loss of hair. Must do Labs diligently or else it will easily go to toxic levels and cause even worse side effects - impaired balance, major memory loss and confusion, inability to complete tasks.

Have been on the Prograf and Cellcept combo for 13 years next week. Diabetes (well controlled) as a result and some bad skin cells have had to be removed. Frequent urine elimination. All as result of transplant meds. SMALL PRICE TO PAY for being alive today.

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

Only 5 weeks - a little edginess for first hour or two, then ok. No rejection so far.

Only 3 months since liver transplant. Was on Dialysis.,but after 6 weeks. Had temp. 100.3. Found infection in blood.

Lots of side effects - tremors in hands and feet, but worse - loss of hair. Must do Labs diligently or else it will easily go to toxic levels and cause even worse side effects - impaired balance, major memory loss and confusion, inability to complete tasks.

Have been on the Prograf and Cellcept combo for 13 years next week. Diabetes (well controlled) as a result and some bad skin cells have had to be removed. Frequent urine elimination. All as result of transplant meds. SMALL PRICE TO PAY for being alive today.

Lots of side effects, hair loss is severe. Tingling, blurred vision, and insomnia. I am very thankful for my liver. Six months tomorrow 8/5/2014.

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

Only 5 weeks - a little edginess for first hour or two, then ok. No rejection so far.

Only 3 months since liver transplant. Was on Dialysis.,but after 6 weeks. Had temp. 100.3. Found infection in blood.

Lots of side effects - tremors in hands and feet, but worse - loss of hair. Must do Labs diligently or else it will easily go to toxic levels and cause even worse side effects - impaired balance, major memory loss and confusion, inability to complete tasks.

Have been on the Prograf and Cellcept combo for 13 years next week. Diabetes (well controlled) as a result and some bad skin cells have had to be removed. Frequent urine elimination. All as result of transplant meds. SMALL PRICE TO PAY for being alive today.

Lots of side effects, hair loss is severe. Tingling, blurred vision, and insomnia. I am very thankful for my liver. Six months tomorrow 8/5/2014.

I've been on this drug for 9 years. Some side effects, mainly shaking & trembling hands. Works great and it is better than the alternative. I am so thankful.

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

Only 5 weeks - a little edginess for first hour or two, then ok. No rejection so far.

Only 3 months since liver transplant. Was on Dialysis.,but after 6 weeks. Had temp. 100.3. Found infection in blood.

Lots of side effects - tremors in hands and feet, but worse - loss of hair. Must do Labs diligently or else it will easily go to toxic levels and cause even worse side effects - impaired balance, major memory loss and confusion, inability to complete tasks.

Have been on the Prograf and Cellcept combo for 13 years next week. Diabetes (well controlled) as a result and some bad skin cells have had to be removed. Frequent urine elimination. All as result of transplant meds. SMALL PRICE TO PAY for being alive today.

Lots of side effects, hair loss is severe. Tingling, blurred vision, and insomnia. I am very thankful for my liver. Six months tomorrow 8/5/2014.

I've been on this drug for 9 years. Some side effects, mainly shaking & trembling hands. Works great and it is better than the alternative. I am so thankful.

I have just crossed the 1 year mark for using prograf and take the generic for lung transplant. At first it looked like I was going to be diebetic but that passed within the first month of being on it. I started out at 4.5 mg twice a day and with in 9 months I was down to 2 mg twice a day and now I am back up to 4.5 mg twice a day to hold at 8-10 range. Hand tremors at times and when they happen it is a pain to eat. My biggest problem seems to be feet and leg pains that by the end of the day hurts like the devil to walk or even sit at times and have to take pain meds to help control these pains. I have had Insmonia from day 1 and I take 5mg of Ambien to help me sleep. I have learned to control the mood swings with the help of God and prayer. Prograf has its issues in life, but it is far better to breathe and deal with these other issues than it would have been to die from not breathing. I thank God for this drug and my family who has stood by me in these times.

START 1-15-2014 DOUBLE ORGAN TRANSPLANT LIV/KID 20 MONTHS GOING STRONG

Only 5 weeks - a little edginess for first hour or two, then ok. No rejection so far.

Only 3 months since liver transplant. Was on Dialysis.,but after 6 weeks. Had temp. 100.3. Found infection in blood.

Lots of side effects - tremors in hands and feet, but worse - loss of hair. Must do Labs diligently or else it will easily go to toxic levels and cause even worse side effects - impaired balance, major memory loss and confusion, inability to complete tasks.

Have been on the Prograf and Cellcept combo for 13 years next week. Diabetes (well controlled) as a result and some bad skin cells have had to be removed. Frequent urine elimination. All as result of transplant meds. SMALL PRICE TO PAY for being alive today.

Lots of side effects, hair loss is severe. Tingling, blurred vision, and insomnia. I am very thankful for my liver. Six months tomorrow 8/5/2014.

I've been on this drug for 9 years. Some side effects, mainly shaking & trembling hands. Works great and it is better than the alternative. I am so thankful.

I have just crossed the 1 year mark for using prograf and take the generic for lung transplant. At first it looked like I was going to be diebetic but that passed within the first month of being on it. I started out at 4.5 mg twice a day and with in 9 months I was down to 2 mg twice a day and now I am back up to 4.5 mg twice a day to hold at 8-10 range. Hand tremors at times and when they happen it is a pain to eat. My biggest problem seems to be feet and leg pains that by the end of the day hurts like the devil to walk or even sit at times and have to take pain meds to help control these pains. I have had Insmonia from day 1 and I take 5mg of Ambien to help me sleep. I have learned to control the mood swings with the help of God and prayer. Prograf has its issues in life, but it is far better to breathe and deal with these other issues than it would have been to die from not breathing. I thank God for this drug and my family who has stood by me in these times.

I am a lung transplant and was put on prograf shortly after transplant. I have had two severe bouts of side affects. The prograf got out of whack and I went completely out of my my mind....the first time for 19 days...the second time just 3 days. I have been able to tolerate it for almost ten years. I also took Rapamune but for some reason my doctor decided not to continue it. He watches me carefully and I get blood tests once a month.

Absolutely, no rejection. Transplant was 6 months ago. No side effects. Feel great!

Absolutely, no rejection. Transplant was 6 months ago. No side effects. Feel great!

Have been taking Prograf(brand name) for one year after kidney transplant and creatinine was always between 1.3 and 1.4. Now have been switched to Tracolimus (generic)for three months and the creatinine level has increased from 1.5 to 1.7. Has anyone else experienced this switching to generic or does anyone know if this could be the problem.

Absolutely, no rejection. Transplant was 6 months ago. No side effects. Feel great!

Have been taking Prograf(brand name) for one year after kidney transplant and creatinine was always between 1.3 and 1.4. Now have been switched to Tracolimus (generic)for three months and the creatinine level has increased from 1.5 to 1.7. Has anyone else experienced this switching to generic or does anyone know if this could be the problem.

I had liver transplant on June 2010 due to Hep B caused liver cancer. Taking Prograf since day 1, now down to 1mg twice a day. Minor side effects include high blood pressure and cold hands. Very thankful.