Liver transplant - Let's support each other

@jacinta I was worried about a liver transplant too. When I was told it was inevitable I reached out to this group. That was almost 3 years ago. I am now 1 1/2 years post transplant. Trust your doctors and always feel free to ask any questions to this group. Everyone is wonderful, full of tips and great advice. It is a scary process but we're here for you to lean on ❤🇨🇦

Best wishes for a good outcome.

I have had ERCPS since 1990 which helped with that awful scratching. However, the Doctor told me yesterday that the ERCPs days are over as I’m not getting a year out of them anymore. I have a tumor in the bile area. . . Won’t know the results until next week.

I’m worried about getting a liver transplant.

Thanks for that info.! Sounds just like me. Yes,the doctors have said the rashes were from the Tac. Since they dropped me to 4 mil.a day, the rashes have,for the most part,gone away. Now they are about the size of a silver dollar. I will take that anyday over what I went through before they dropped my dose. They use to get as wide and as big as my foot! I’m a size 10 wide!!

This is a great question, @rowdyramsey, and @gaylea is correct.
Tacrolimus is a generic version and cheaper. I used to be on Prograf (brand name) and was switched to the Tacrolimus when it (generic) became available. My labs and I did not experience any changes, although my costs were reduced!
I have been taking Tacrolimus for most of almost all of my 11 years with my transplant. And still do today.
I have a routine prograf lab kit that is tested at Mayo to monitor the level of prograf in my blood. It has to be within a target range that is individual for every patient and organ. On occation my dosage has been adjusted to keep me at the best level for me. Not too high, Not too low, but just right. 😊
What have your doctors said about the rash? Do they think there is a connection to the medication? Other than the rash, How are you getting along?

So,Tac.is considered as old as Prograf?

@rowdyramsey Prograf is tacrolimus but not a generic form. There are various generic forms of tacrolimus. Prograf is the name brand, the original, thus more expensive than the generic.

You mean Prograf is better then tacolomus? Do u know why?

My liver doctor told me that it was the best. I have no clue what’s better! When I was having those rashes so bad,the doctor would not change my meds , (Tac) because he said it was the strongest and “best” one out there. They were not willing to take me off the Tac. no matter how bad my rashes got. Who knows! God bless

@msgtrebholtz Hi, Jason, I too welcome you to Connect, particularly to the liver transplant group. I had my transplant in September, 2016, at Mass General Hospital.
You have already been through quite a lot, that's for sure, but you have a great positive attitude. I am glad things are going so well now.
I agree with you, I wish I had been aware of this group when I was pre-transplant. It is always helpful to have contact with people who have or have had similar circumstances.

@rowdyramsey Ramona, I think you are correct, that tacrolimus must be the best immunosuppressant for liver transplant recipients. It seems to be what everyone is initially prescribed. Then some of us, me included, have problems that require a different immunosuppressant. Tacrolimus was causing my creatinine numbers to be high. We tried battling that by drinking a lot of fluid daily -- 80 - 100 ounces -- but the high numbers persisted so I was changed to sirolimus. That has worked out well for me. I never had any problem with tacrolimus that I felt though, but I have heard of many people who do have problems with it.
JK