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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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katebw | @katebw | Oct 30, 2022
In reply to @bosco17 "What meds are you on? What dosages? Im on mycophelonate only @ 500mg -2x daily ...." + (show)
@bosco17

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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@bosco17 I also take 3 mg tacrolimus daily- 2 mg am, 1 mg pm. I used to take prednisone but not for many months. Otherwise I currently take pantropazole 40mg daily, entecavir as my new liver is infected with hep b, metoprolol to keep blood pressure low (50 mg twice a day- I had developed portal hypertension. I take 1 baby aspirin daily due to a small vessel attaching my liver. I used to take more. Ultimately I’m told I’ll be on tacrolimus for life but not Myfortic. I also keep tacrolimus level to 6-8 and I have labs done every two weeks. I feel much better than I did this spring/summer.

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hello1234 | @hello1234 | Oct 30, 2022

@katebw
You mentioned that you got the norovirus in May. How do you think you caught the norovirus? Was it restaurant food, cruise food, or something else?

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1 reply
katebw | @katebw | Oct 30, 2022
In reply to @hello1234 "@katebw You mentioned that you got the norovirus in May. How do you think you caught..." + (show)
@hello1234

@katebw
You mentioned that you got the norovirus in May. How do you think you caught the norovirus? Was it restaurant food, cruise food, or something else?

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I don’t know how I caught it. At the time I was not going to restaurants and I’ll never ever go on a cruise. I want working then. It was going around then. I could have been infected anywhere.

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1 reply
hello1234 | @hello1234 | Oct 30, 2022
In reply to @katebw "I don’t know how I caught it. At the time I was not going to restaurants..." + (show)
@katebw

I don’t know how I caught it. At the time I was not going to restaurants and I’ll never ever go on a cruise. I want working then. It was going around then. I could have been infected anywhere.

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@katebw It sounds like when people ask me how I caught covid. I was being super careful and I still got it. I guess the norovirus works the same way. Regarding cruises, pre-transplant I loved cruises. But after my transplant I don't think I will ever go on a cruise again. Between covid, the norovirus and other infections, I don't think cruise ships are that safe for transplant patients.

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bosco17 | @bosco17 | Oct 31, 2022
In reply to @myfablife "Hi, Bosco17 i hope that I will be able to get to just one anti rejection...." + (show)
@myfablife

Hi,
Bosco17 i hope that I will be able to get to just one anti rejection. It was my understanding that I would always have to be on prograf. Right now I am on myfortic/prograf the good news is my prograf is 1mg twice a day”which I think is pretty low dose” If they lowered your cellcept do they think u might have rejection.
I know each of of are going to be different, do u feel that it depends if we received a healthy organ due to a organ that was not healthy.

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It depends on how good a match the new liver has with certain markers in your body. The better the match the better youll do . How are the side effects from Myfortic and how much do you take?

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scottij | @scottij | Oct 31, 2022

I use Mycophenolate as part of my overall drug regimen. 750 mg in the AM and 750 mg in the pm. While I take a pantoprazole (protonix) every morning to prevent nausea and GERD, the use of "Mike" has not seemed to cause any gastrointestinal issues.
Best always,
s!
Scott Jensen

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myfablife | @myfablife | Oct 31, 2022

Hi All,
I was told by my LTP team I have a excellent graft never told about any markers.
I am on 1080 of myfortic per day. I to had portal hypertension pre TP and take a low dose aspirin.
I think that is why I have done so well. I am 2yrs. LTP I have not had Covid thus far or flu.🤞🏻
I just hope all of u stay well and happy this upcoming holiday season.

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jp1023 | @jp1023 | Nov 1, 2022

I had to stop taking mycophenalate for these reasons as well. My quality of life was awful. I also experienced rejection while taking it. I take myfortic (two tabs 2x day) and it is keeping my rejection away, but my blood numbers have been lower.

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1 reply
bosco17 | @bosco17 | Nov 1, 2022
In reply to @jp1023 "I had to stop taking mycophenalate for these reasons as well. My quality of life was..." + (show)
@jp1023

I had to stop taking mycophenalate for these reasons as well. My quality of life was awful. I also experienced rejection while taking it. I take myfortic (two tabs 2x day) and it is keeping my rejection away, but my blood numbers have been lower.

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What blood numbers are lower? Any side effects from Myfortic?

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1 reply
bosco17 | @bosco17 | Nov 1, 2022
In reply to @scottij "I use Mycophenolate as part of my overall drug regimen. 750 mg in the AM and..." + (show)
@scottij

I use Mycophenolate as part of my overall drug regimen. 750 mg in the AM and 750 mg in the pm. While I take a pantoprazole (protonix) every morning to prevent nausea and GERD, the use of "Mike" has not seemed to cause any gastrointestinal issues.
Best always,
s!
Scott Jensen

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Ive been on Mycophelonate for 14 years thats why its chewing my GI> Look at the long term side effects of PPI use!!!!!!!!!!!!!!!

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