Clinical Trials

[WYOAnne]

With the weekly emails from the NKF regarding clinical studies, I thought I would share my story.

When I had my kidney transplant on 10/15/99 I was #1 in a clinical double blind drug study. Double blind meant that no one knew which drug I was given. Back then, at U of WI they put transplant patients on Neoral and Cellcept. Cellcept really had some bad side effects for your gastrointestinal tract. Many transplant recipients wound up with ulcers and some had daily diarrhea. In the study I would either receive cellcept or the new improved version of the drug ERL13 that had less side effects. Yes, I found out at the end of the study that I was taking Cellcept and I did have daily diarrhea. At the end of 6 months I received the new drug and neoral. It made such a difference for me.

The new drug ERL13 has a name now MYFORTIC.

Reading all of the info about clinical studies from the NKF - I did get paid for mileage and had extra appointments that I was also paid a stipend for. I did not find out which drug I was given until the whole study was completed, which was 3 years. I however, figured it out right away, since Myfortic made such a difference in my daily life. I felt really good about being in the study, because I felt like I was not only helping myself, but transplant recipients to come. Even though I suffered from daily diarrhea, if not in the study I would have had the same result since I would have been put on Cellcept. The point I am trying to make, I guess, is, the study helped me with my transplant drugs since I was able to take Myfortic before it was offered at local drug stores and mail order pharmacies.

Find out all of the facts before you enter a study, but I found the whole experience very rewarding.

[kindralynn]

Thank you for your participation in that study, people like you saved much grief for people like me. I received my kidney transplant on 1/11/18, and was placed on the cellcept. I experienced intolerable diarrhea, and had to be switched to the Myfortic, luckily, the drs knew exactly what was causing my issue, so, thank you for your contribution to their knowledge

[WYOAnne NKF Ambassador in reply to kindralynn]

Oh, WOW! There is diarrhea and then there is Cellcept diarrhea!!!! I am so glad your doctors knew to switch you. I know for my insurance my transplant team had to write a letter saying that I needed the Name Brand Myfortic.

Congratulations on your "gift of life." Isn't it incredible how much better you feel Hope all goes well for you now! Take care......

[Hidden]

That is the truth about Cellcept/Mycophenolate. I am supporting the imodium foundation.