Hello, I am 12 years post transplant and I was taken off tacrolimus about 5 years ago and placed on sirolmus. My transplant was done at Baylor Dallas. They claimed that the tacrolimus was more renal toxic. I have done great on sirolimus and last year I was taken off of Myfortic as well and still doing fabulous and feeling so much better with more energy, etc. I take only 1mg Sirolimus every other day and liver enzymes have not changed. Life is good.
I just finished my 1year 3 day checkup with biopsy after a kidney transplant at Mayo Rochester. I take 750. Cellcept and 2.5 mg of Tacrolimus and 5 mg of Prednizone daily. I got a clean bill of health with no changes to meds. Yay! My only complaint is arthritis especially in my hands and nothing but Tylenol to take for it. Actually I realize how blessed i am that, that is the only thing I have to whine about. 💕
@annmariaa, I have a liver transplant, too, and a kidney. I got them both at the same time from the same deceased donor. It is called a simultaneous transplant. I have not had any problems with tacrolimus or cellcept. My team keeps a close eye on both of the organs. It sounds complicated how different we all are and how our medications need to be individualized. We are definitely not one-size-fits-all patients. I am extremely grateful for my transplant team, and my PCP who keep me under their radar.
I transplanted in 2009.
I have an appointment on April 5th to see Dr. I know it's the meds. My sister is a nurse and we both researched it. At this point I can only stand for a little while before I have to hold on to something cause my tremors are so bad. Luckily I have a handle in the shower or I wouldn't be able to take a shower without assistance. I feel like I'm slowly dying
@alakin, I am thinking of you. I hope that you are feeling better. What has your doctor had to say or do to help you? Are you a candidate for belatacept or another medicine?
@alakin, I am thinking of you. I hope that you are feeling better. What has your doctor had to say or do to help you? Are you a candidate for belatacept or another medicine?
@alaking, I don't know if you got my message - I just saw that I didn't spell your @name correctly.
How are you getting along?
What did you learn about taking Belatacept?
Hi @peggykatz 😊
Good morning! Here is the discussion about Belatacept. Maybe post your question here. I looks like @lendries is taking Belatacept with a very positive experience, so that's great news!
Hope this helps!
@alaking, I don't know if you got my message - I just saw that I didn't spell your @name correctly.
How are you getting along?
What did you learn about taking Belatacept?
I have had a positive experience with it, started after rejection issues with prograf ,and Rappamune. I was just curious if it’s being used as protocol after new transplants?
My 40 yr old daughter also has PKD and started testing process got transplant, Her GFR is 23 so it may be a yr before potential donors can be tested.
Thank you
Peggy
I have had a positive experience with it, started after rejection issues with prograf ,and Rappamune. I was just curious if it’s being used as protocol after new transplants?
My 40 yr old daughter also has PKD and started testing process got transplant, Her GFR is 23 so it may be a yr before potential donors can be tested.
Thank you
Peggy
Peggy, I don't have any experience with Belatacept. I did some searching, and I found that it is being researched at Mayo Clinic as a steroid-free option for kidney transplant recipients.
Here is a statement from The Kidney Transplant Dept - Care at Mayo Clinic Section under the Research Topic. - "... Other research areas include looking at new ways to use immunosuppressive medications, including tacrolimus (Prograf, Protopic, others), sirolimus (Rapamune), belatacept (Nulojix) and steroid-free immunosuppression medication options, to help reduce side effects and complications for people with kidney transplants..." https://www.mayoclinic.org/tests-procedures/kidney-transplant/care-at-mayo-clinic/pcc-20384782
I have been on belatacept for almost 8 yrs. It has worked very well for me. I have had no problems with it. I get my infusion once a month forever. I don’t mind having to go. It’s a half hour treatment that takes about 1 1/2 hrs total unless it’s really busy like it will be this Tuesday because of the holiday.
Hi @banksnc49 😊
I am a two year post kidney transplant patient.
I am very happy to hear that everything is going so well with your Belatacept infusions. I am curious when and why they changed you to Belatacept infusions. (I like to educate myself on the arsenal of immune suppression drugs and when they are used). Were you having a problem tolerating Tacronlimis or Cellcept or was it something else?
Thanks so much for sharing your experience!
Connect
Connect
Like
Helpful
Hug
I just finished my 1year 3 day checkup with biopsy after a kidney transplant at Mayo Rochester. I take 750. Cellcept and 2.5 mg of Tacrolimus and 5 mg of Prednizone daily. I got a clean bill of health with no changes to meds. Yay! My only complaint is arthritis especially in my hands and nothing but Tylenol to take for it. Actually I realize how blessed i am that, that is the only thing I have to whine about. 💕
-
Like -
Helpful -
Hug
4 ReactionsCongrats on a great checkup
-
Like -
Helpful -
Hug
1 Reaction@annmariaa, I have a liver transplant, too, and a kidney. I got them both at the same time from the same deceased donor. It is called a simultaneous transplant. I have not had any problems with tacrolimus or cellcept. My team keeps a close eye on both of the organs. It sounds complicated how different we all are and how our medications need to be individualized. We are definitely not one-size-fits-all patients. I am extremely grateful for my transplant team, and my PCP who keep me under their radar.
I transplanted in 2009.
-
Like -
Helpful -
Hug
1 Reaction@alakin, I am thinking of you. I hope that you are feeling better. What has your doctor had to say or do to help you? Are you a candidate for belatacept or another medicine?
@alaking, I don't know if you got my message - I just saw that I didn't spell your @name correctly.
How are you getting along?
What did you learn about taking Belatacept?
Hi @peggykatz 😊
Good morning! Here is the discussion about Belatacept. Maybe post your question here. I looks like @lendries is taking Belatacept with a very positive experience, so that's great news!
Hope this helps!
-
Like -
Helpful -
Hug
2 ReactionsI have had a positive experience with it, started after rejection issues with prograf ,and Rappamune. I was just curious if it’s being used as protocol after new transplants?
My 40 yr old daughter also has PKD and started testing process got transplant, Her GFR is 23 so it may be a yr before potential donors can be tested.
Thank you
Peggy
-
Like -
Helpful -
Hug
1 ReactionPeggy, I don't have any experience with Belatacept. I did some searching, and I found that it is being researched at Mayo Clinic as a steroid-free option for kidney transplant recipients.
Here is a statement from The Kidney Transplant Dept - Care at Mayo Clinic Section under the Research Topic. - "... Other research areas include looking at new ways to use immunosuppressive medications, including tacrolimus (Prograf, Protopic, others), sirolimus (Rapamune), belatacept (Nulojix) and steroid-free immunosuppression medication options, to help reduce side effects and complications for people with kidney transplants..."
https://www.mayoclinic.org/tests-procedures/kidney-transplant/care-at-mayo-clinic/pcc-20384782
I want to tag @ladydidehart, @banksnc49, @nanmargaret to join this conversation because they have some experience with belatacept.
-
Like -
Helpful -
Hug
6 ReactionsI have been on belatacept for almost 8 yrs. It has worked very well for me. I have had no problems with it. I get my infusion once a month forever. I don’t mind having to go. It’s a half hour treatment that takes about 1 1/2 hrs total unless it’s really busy like it will be this Tuesday because of the holiday.
-
Like -
Helpful -
Hug
3 ReactionsHi @banksnc49 😊
I am a two year post kidney transplant patient.
I am very happy to hear that everything is going so well with your Belatacept infusions. I am curious when and why they changed you to Belatacept infusions. (I like to educate myself on the arsenal of immune suppression drugs and when they are used). Were you having a problem tolerating Tacronlimis or Cellcept or was it something else?
Thanks so much for sharing your experience!
-
Like -
Helpful -
Hug
1 Reaction