Welcome @mlr733, to the transplant group. I thought I would answer you here to bring you into a discussion related to Cellcept so you can get feedback from fellow members like @rosemarya@hello1234@athenalee and others.
You asked:
"I've been taking cell cept for 14 yrs post liver transplant. My liver doctor retired so recently I saw new liver doc, who wants me entirely off cell cept for good. Anyone gone through this sort of issue? Thankx"
Can you give us a bit more information? Did your new doctor explain why s/he wants you off of Cellcept entirely?
I had my liver transplant in September 2016 and was taken off of Cellcept in less than a year, I am thinking it was at around 6 months. I was then just on Tacrolimus but eventually that was changed to Sirolimus due to high creatinine. They first tried having me drink 80-100 ounces of water a day but that was not enough help so they changed me to Sirolimus and I have not had a problem since. So, Sirolimus is the only anti-rejection medication that I am now on. I was on a tiny dose of prednisone for a long time but I finally got off of that about a year ago. I have never had a single problem post-transplant so they must be doing something right.
I think the bottom line is that each transplant center has its own preferred protocols that they tailor to each particular patient. If you trust your new transplant center, and I assume they would follow you with more frequent lab work than usual, then I would welcome getting off of a medication. I just figure the fewer medications I am on the better.
JK
Thank you for your reply, the first thing that came out of his mouth after hello was " why are you still on cell cept", I replied I've always been on cell cept and tecrolimus. He said I didn't need to be on it, I should have been taken off of it years ago. He wanted to start reducing it that day and start bloodwork once a week. I have never heard from any liver doctor nurse or person anything like this. I said I was going on vacation and would be back in a month. He was disappointed. My transplant coordinator call the next day saying to do bloodwork when I return so see him again in November. He is going to do this and I'm feeling like a lab rat. My feelings are if it's not broken don't fix it, I've been feeling great for years and my bloodwork always looks really good and even great they have told me. Thank you again for your input it's the only one I've gotten so far. MLR My transplant clinic is at VCU health, a teaching and research hospital.
@mlr733, I hope that you had an enjoyable and relaxing vacation! I am thinking about you and your 'before vacation' visit with the new doctor. Now that you are back home, have you followed up on the question of getting off Cellcept? What have you found out about the reason or safety of the change? How are your labs?
Yes, I was also wondering how u r doing. I hope to get off of some my immunosuppressants soon to.
I am 2 yrs. and like u not one single problem either. I wonder if it is b/c we received a healthy organ.
I am so happy for u 6yrs. AWESOME for sure💚😊
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Hi, @mlr733 I too Welcome you to Connect.
I had my liver transplant in September 2016 and was taken off of Cellcept in less than a year, I am thinking it was at around 6 months. I was then just on Tacrolimus but eventually that was changed to Sirolimus due to high creatinine. They first tried having me drink 80-100 ounces of water a day but that was not enough help so they changed me to Sirolimus and I have not had a problem since. So, Sirolimus is the only anti-rejection medication that I am now on. I was on a tiny dose of prednisone for a long time but I finally got off of that about a year ago. I have never had a single problem post-transplant so they must be doing something right.
I think the bottom line is that each transplant center has its own preferred protocols that they tailor to each particular patient. If you trust your new transplant center, and I assume they would follow you with more frequent lab work than usual, then I would welcome getting off of a medication. I just figure the fewer medications I am on the better.
JK
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3 Reactions@mlr733, I hope that you had an enjoyable and relaxing vacation! I am thinking about you and your 'before vacation' visit with the new doctor. Now that you are back home, have you followed up on the question of getting off Cellcept? What have you found out about the reason or safety of the change? How are your labs?
Yes, I was also wondering how u r doing. I hope to get off of some my immunosuppressants soon to.
I am 2 yrs. and like u not one single problem either. I wonder if it is b/c we received a healthy organ.
I am so happy for u 6yrs. AWESOME for sure💚😊
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Like -
Helpful -
Hug
2 Reactions