Switching from Tacrolimus to Cyclosporine post kidney transplant

Posted by benedict66066 @benedict66066, Apr 17 9:51am

The folks at Mayo are switching me from Envarsus (tacrolimus) to Cyclosporine due to side effects post kidney transplant. Can anyone who has had this happen tell me what it was like? Did it help you feel better? Were there unforeseen problems?

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hello1234 | @hello1234 | 6 days ago

In reply to @jeffhuegel "Yeah I had cognitive issues, couldn’t figure out how to use silverware or even draw a..." + (show)

@jeffhuegel
WOW, that's a scary side effect Jeff. I am so happy to hear that you are doing much better with the med change.
How long will you be doing weekly blood level tests to check the Cyclosporine level?

jeffhuegel | @jeffhuegel | 6 days ago

I am 1 year post transplant and still weekly. I had a few little hiccups, nothing major so that’s why weekly. Usually 6 months they go to every other week and at 1 year monthly. I have to wait until early May after kidney biopsy to hopefully start monthly blood work 🙂

stephanierp | @stephanierp | 4 days ago

Hello,
I am a kidney transplant person and I made the switch from Tac to Cyclosporine several years ago. Immediately, my blood sugar came back down to normal and the pancreatic issues were resolved. I feel much better on Cyclosporine. The side effects I have experienced are higher cholesterol and I go to the dentist twice a year, due to potential gum and dental issues (a possible side-effect). I am happy to deal with these effects rather than pancreatitis (incredibly painful). Another nice side-effect is my hair came back thick and full again. So that was nice:)

benedict66066 | @benedict66066 | 4 days ago

In reply to @stephanierp "Hello, I am a kidney transplant person and I made the switch from Tac to Cyclosporine..." + (show)

@stephanierp I'm so glad your experience got so much better. Are you taking mycophenolate and prednisone as well? If so, did they reduce the mycophenolate after a year?

stephanierp | @stephanierp | 4 days ago

In reply to @benedict66066 "@stephanierp I'm so glad your experience got so much better. Are you taking mycophenolate and prednisone..." + (show)

@benedict66066 After the first year, I went off of the prednisone and mycophenolate was reduced to as low as I can go. So I am currently on Mycophenolate and Modified Cyclosporine. When my meds were changed, I felt better - more energy. Because each individual body is different - different meds work better in different bodies. For me, I have felt much better and my kidney function tests have remained strong - no change. My meds were changed approximately 2 and 1/2 years after my kidney transplant. So I have been on them for about 3 and 1/2 years.

benedict66066 | @benedict66066 | 3 days ago

In reply to @stephanierp "@benedict66066 After the first year, I went off of the prednisone and mycophenolate was reduced to..." + (show)

@stephanierp thanks for this, Stephanie! So if I understand you, your meds were not reduced until 2 1/2 years after your transplant? What was the reason for going off prednisone? If you don’t mind saying, it’s OK if you do. 🙂

stephanierp | @stephanierp | 3 days ago

In reply to @benedict66066 "@stephanierp thanks for this, Stephanie! So if I understand you, your meds were not reduced until..." + (show)

@benedict66066
Sorry for confusion.
My initials meds were reduced over the course of a few months.
I went off prednisone after a year.
And changed from Tac to Cyclosporine 3 and 1/2 years ago.

stephanierp | @stephanierp | 3 days ago

In reply to @benedict66066 "@stephanierp thanks for this, Stephanie! So if I understand you, your meds were not reduced until..." + (show)

@benedict66066 Oh, I went off Prednisone because I was concerned about long-term effects of a steroid and my doctor said he was comfortable with me going off of it. I think different transplant centers have different protocols. Mine said it was ok.

benedict66066 | @benedict66066 | 3 days ago

This is all very helpful to me. I appreciate you taking the time. I am only 13 weeks out from transplant but am finding the stomach upset and fatigue/weakness to be very difficult. ~My team is trying to help while still protecting the kidney.