Discussions that mention prograf

Diabetes board


Hi folks. Right off the bat I am going to ask you to forgive my cynicismy. The truth about these "cures" that you read about is simple. There are a number of centers using the Edmonton Protocol for islet transplantation and when they want more funding and donations they have contact the media and talk about a "cure".

Right now most centers will only transplant diabetics with no complications who have tremendous trouble with unexpected lows. There are a few places that are beginning to study islet transplantation after kidney transplant. But not many.

There are a lot of downsides to islet transplants. One of the things they don't advertise is the fact that they don't last very long. First, you usually have to have 2 or 3 transplants until you are completely off insulin. Because it takes time and you have to wait for a donor, this can take a great many months. Next, the islets don't last very long. A major breakthrough occured in Edmonton and was announced in 2000. They had (I believe) about 16 people in the original study. By the end of 18 months, none of them were still free of taking insulin. I believe that at this point the average longevity of an islet cell transplant is about 18 months. I don't know about you but I don't think I could handle not having diabetes (after almost 40 years) and then getting it again. You'll notice that no one ever talks about the emotional well being of the people who lost their new islets after less than 2 years. The other big problem is the anti-rejection medication. I know that in Edmonton they use Prograf and Rapamune (I think Fairview in Minneapolis also uses this regime). Prograf is neurotoxic and also nephrotoxic. You could lose your kidneys among other things. The levels of rapa used are very, very high and it too has a very large number of side effects including nsomnia, depression, stomach problems, etc. Between these 2 drugs you can have significant side effects on every portion of your body. I currently am on these two drugs (kidney transplant in 2002) but the levels that I am on are much lower than what you would get if you got the islets. At least you wouldn't have to worry so much about getting diabetes from the prograf.

Sorry folks, but a real cure, one that would be not dangerous and available to many, is still a very long way off.

Take care.

Cora