Mycophenolate or Myfortic: Do you have GI side effects?

Posted by bosco17 @bosco17, Oct 28, 2022

Liver tx-2008 14 years later Im only on 500mg 2x daily of mycophelonate. BUT its tearing up my entire GI tract - stomach ulcer, gastritis, colitis , UC that resolved. My quality of life has gone down the drain. Is there anyone else experiencing GI side effects from Mycophelonate and what have you done to deal with it?

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Hi @bosco17 😊
I am a two year post kidney transplant patient that takes Mycophenolate and Tacronlimis as my immune suppression meds. My understanding has been that Myfortic can be offered as a replacement to Mycophenolate when there are GI issues. Have you ever discussed this with your transplant doctor or local doctor? Are these new symptoms?

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@hello1234

Hi @bosco17 😊
I am a two year post kidney transplant patient that takes Mycophenolate and Tacronlimis as my immune suppression meds. My understanding has been that Myfortic can be offered as a replacement to Mycophenolate when there are GI issues. Have you ever discussed this with your transplant doctor or local doctor? Are these new symptoms?

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Myfortic is not indicated for liver tx patients. It is only approved for kidney transplant patients. However I have spoken to my transplant team and they may due a trial on me with Myfortic. Myfortic is metabolized in the small intestine instead of the stomach like Mycophelonate which is how it reduces stomach issues. My question is this if Mycophelonate ripped up my stomach will Myfortic do the same to my small intestine? The GI issues started about 2-3 years ago when I came up with UC. From then on its be a horror waking up everyday with pain thoughout my GI tract.Quality of life has become very very limited to where I can go and what I could eat. The Drs wanted me to use PPIs first to see if that helps but the long term side effects of PPIs is not good and I cant tolerate them besides that only masks the problem and dosent treat the CAUSE.! Anyhow thanks for your sugestion and that will probably be the way I will go is Myfortic because the only other way is to reduce the dosage of the Mycophelonate which requires close monitoring and carries the risk of rejection! Its a shame because the transplant was a God given gift to me but the medications that we have to take is what will kill us in the end as its the co-morbidities of the meds that cause the problems. Thanks for your suggestion

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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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@bosco17 I forgot to ask. Are you on any treatment for your UC? Have you discussed your UC with a specialist in addition to discussing your Mycophenolate adverse GI issues with transplant?

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@bosco17 I had a liver transplant a year ago today. Since May I switched to Myfortic as mychophenalate was too hard in my stomach. Plus dose was reduced. I feel enormous relief now- took about 2 weeks to feel a difference.

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Hi,
Myfortic and mychophenalate are basically the same drug and are definitely used for LTP pts. Like one person mentioned myfortic goes thru the small intestine versus the stomach. I am not sure why someone said LTP it is not indicated. I am 2yrs. LTP and take Myfortic.
Check w/your TP coordinator, she should be able to help!
So hate to hear u are having issues w/your GI, u need to be enjoying life after your TP.😊💚

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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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What is PPI?

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@hello1234

@bosco17 I forgot to ask. Are you on any treatment for your UC? Have you discussed your UC with a specialist in addition to discussing your Mycophenolate adverse GI issues with transplant?

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It went away on its own . Dont ask me how or why but when they did a follow up colonscopy the ulcers were gone.

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Hi @joko 😊
It's great to hear from you! PPI meds are proton pump inhibitors that reduce the amount of acid in the stomach so the stomach lining has a chance to heal.
I hope everything is going well with you!

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@bosco17 😊
I was so happy to see @katebw and @myfablife jump in with their experiences! It sounds like Myfortic is used very successfully with liver transplant patients that have GI concerns..... That's awesome news!! ❤

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