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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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hello1234 | @hello1234 | Oct 29, 2022

@katebw and @myfablife 😊
I forgot to ask you. What were the GI symptoms that you were experiencing when you changed from Mycophenolate to Myfortic? I am wondering if I ask my transplant team about it too. I always take my Mycophenolate with food, but occasionally I have a bad sour or acid taste. I am wondering if that was your symptom too?
Thanks so much for sharing your experiences ❤

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myfablife | @myfablife | Oct 29, 2022

Omgosh anytime, I was having stomach pain/diarrhea that would get me dehydrated where I had to have IV fluids. So that is when my TP team changed me to myfortic. I take Prograf also. I still have to take a anti acid otc sometimes.
I hope u get to feeling better😊💚

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katebw | @katebw | Oct 29, 2022

I had nausea and diarrhea also, plus what I guess was heartburn. I also had the norovirus in May and was so dehydrated I was admitted for 2 nights for fluids etc. after that, I was switched to Myfortic and life had been better. I take 1 180 mg tab twice each day, plus total 3 mg tacrolimus each day. I stopped taking Actigal (I think that was irritating too) and restarted pantropazole. I drink about 80 oz water daily. I have a history of UC but it’s been fairly quiet for many years and I don’t take anything for it.

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hello1234 | @hello1234 | Oct 29, 2022

Thank you so much @katebw and @myfablife 😊
You guys are awesome! I really appreciate hearing the details of your change from Mycophenolate to Myfortic. It's good to know there is a successful alternative to Mycophenolate if needed. I also take 6mg Envarsus XR (Tacronlimis) each day with my breakfast. Thanks again for the scoop!! ❤

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hello1234 | @hello1234 | Oct 30, 2022

@katebw 😊
You mentioned you had the norovirus in May. Were you on a cruise or did you get norovirus from eating out at a restaurant... or something else? I know it can be highly contagious.

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bosco17 | @bosco17 | Oct 30, 2022
In reply to @hello1234 "@bosco17 I forgot to ask. Are you on any treatment for your UC? Have you discussed..." + (show)
@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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Yes I have my GI doctor @ Mayo.I got rid of my U.C. w/an Holistic approach as the meds they gave me (Mesalamine) were giving me bad side effects and had to be stopped. Ive discussed Myfortic with transpalnt team and will most likely make the switch!

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bosco17 | @bosco17 | Oct 30, 2022
In reply to @hello1234 "Hi @bosco17 😊 My Mycophenolate has been reduced twice in the last two years due to..." + (show)
@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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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

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bosco17 | @bosco17 | Oct 30, 2022
In reply to @katebw "@bosco17 I had a liver transplant a year ago today. Since May I switched to Myfortic..." + (show)
@katebw

@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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What meds are you on? What dosages? Im on mycophelonate only @ 500mg -2x daily . No other rejection drugs. What dosage of Myfortic are you on and do you take any other anti-rejection drugs with the Myfortic?

Thanks

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1 reply
bosco17 | @bosco17 | Oct 30, 2022

Im about to switch from Mycophelonate to Myfortic due to GI side effects. Myfortic is metabolized in the small intestine in lieu of Mycophelonate being metabolized in the stomach. Has any one had side effects from Myfortic and what are they ? Does it harm the small intestine or Colon?

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1 reply
bosco17 | @bosco17 | Oct 30, 2022
In reply to @hello1234 "Hi @bosco17 😊 I am a two year post kidney transplant patient that takes Mycophenolate and..." + (show)
@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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Does Myfortic have any GI side effects . Does it effect the small intestine?

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