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Mycophenolate or Myfortic: Do you have GI side effects?

Transplants | Last Active: Dec 2, 2023 | Replies (54)

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@hello1234

Hi @bosco17 😊
My Mycophenolate has been reduced twice in the last two years due to opportunistic infections. When I was diagnosed with CMV, it was reduced. A year later, I was diagnosed with BK virus and it was reduced again. It's not unusual to be over-immune suppressed with these powerful meds, so a reduction in Mycophenolate may be very appropriate in your situation too.
If your transplant team is comfortable reducing your Mycophenolate, I think you should take their advice. I have seen several posts from liver transplant patients having their Mycophenolate reduced without experiencing any problem of rejection. (Of course I am not a doctor. I am just sharing what I have read).
Also, I think you may want to start the PPI treatment. The PPI treatment will allow your stomach to begin healing without all the additional acid.
I am very hopeful that starting the PPI treatment and reducing your Mycophenolate may offer you relief from your GI issues without rejection. Will you be discussing your "plan of action" this week with your transplant nurse?

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Replies to "Hi @bosco17 😊 My Mycophenolate has been reduced twice in the last two years due to..."

What is PPI?

Heres the Problem . Since 2015 I was taken off cyclosporine because it was eating up my kidneys and I had a heart attack in 2010 (2 yrs after liver tx). Cyclosporine also raises LDL which gave me severe arterialsclerosis contributing to heart attack. It also interacts with Statins . So when they took me off Cyclosporine they raised my Mycophelonate from 250mg to 500mg 2x daily. Ive never rejected being on Mycophelonate alone but my transplant team told me that 1000mg daily of Mycophelonate is the lowest immunsupppresion that is allowed by Protocol. So they tell me to reduce the dosage would be very risky for rejection which I totally disagree with but we have to listen to our TX Team. I have an appt with my Tx Dr to discuss either a switch to Myfortic or a trial to reduce Mycophelonate and will see what they advise. Thanks

When they reduced your dosage of Mycophelonate ,what did they reduce it to ? Im on the lowest dose possible 500mg -2x daily . Note that this is the only anti-rejection drug Im on and reducing the dosage is very risky for rejection. I dont think Im allowed to reduce the dosage as that is the only anti-rejection drug I take. What are your thoughts?