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

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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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?

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@bosco17

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?

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Good morning @bosco17 😊
Yes, you are correct that the "standard" protocol dose of Mycophenolate is 1,000mg twice a day.
That level of Mycophenolate gave me severe neutropenia and leukopenia.
Because it was the first year post kidney transplant, the nurse coordinator was concerned to reduce dosage. My local nephrologist was concerned that I was over-immune suppressed and would get sick.
I got sick.
I was diagnosed with active CMV. My Mycophenolate was reduced to 500mg twice a day.
A year later, I now have the BK virus so my Mycophenolate is reduced again to 250mg bid.
I also take 6mg Envarsus XR (Tacronlimis) to achieve the target blood range of 6 to 8.
I take my meds with food in an attempt to buffer my stomach. If I had to guess, I think your doc will want to make the switch from Mycophenolate to Myfortic at your equivalent lower dosage to see if that does the trick to alleviate your GI issues. (They may also offer a couple months of PPI to help heal your stomach unless you have had a bad experience with PPI.)
It sounds like Myfortic has worked very successfully for @katebw and @myfablife so I am very hopeful that will be your easy solution too!! ❤
Will you please come back and post after your conversation with the doctor and let us know how it goes?

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I want to pop in to this discussion with some information about Mycophenolate.

Here is the Dosing statement for both (links listed below): Mycophenolate Mofetil (Cellcept) and for Mycophenolate (Cellcept, Myfortic)- "The dose of this medicine will be different for different patients. Follow your doctor's orders or the directions on the label. The following information includes only the average doses of this medicine. If your dose is different, do not change it unless your doctor tells you to do so.
The amount of medicine that you take depends on the strength of the medicine. Also, the number of doses you take each day, the time allowed between doses, and the length of time you take the medicine depend on the medical problem for which you are using the medicine."

You can read more about dosing, the Side Effects , and Proper Use -
Mycophenolate Mofetil (Oral Route)
https://www.mayoclinic.org/drugs-supplements/mycophenolate-mofetil-oral-route/proper-use/drg-20073191

Mycophenolate (Oral Route)
https://www.mayoclinic.org/drugs-supplements/mycophenolate-oral-route/proper-use/drg-20073212

I am taking Mycophenolate Mofetil (Cellcept) and I was unaware that each has a different dose prescribes to each medication, and to each different organ.
Thanks for sending me on this search.
@bosco17, @hello1234, @katebw, @myfablife, @joko

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@bosco17

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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Bosco, I moved your newly started discussion to the one you started about Mycophelonate and Myfortic and GI side effects here: https://connect.mayoclinic.org/discussion/mycophelonate-and-side-effects/

I did this since you were already in discussion about the 2 drugs, effects and possibility of switching with several members.

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@hello1234

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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Yes. Everything is very well here. Thanks for asking. Still counting my gratitudes each morning.

On PPI. Of course. Thanks for explanation though. I've been taking mycophenolate for six years and have no stomach or gut issues. Perhaps it has something to do with the Mediterranean style diet I chose years ago. Plus a very active exercise routine. But everyone is different. Good luck to all of those who have difficulty.

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I was put on Myfortic and tacrolimus right after my liver transplant. I had horrible diarrhea and headaches. My doctors said it was the Myfortic and switched me off of it and replaced with Imuran, which I have taken before for my autoimmune disorders. Now I am on tacrolimus and Imuran. No more diarrhea. Still get headaches some nights, but not all as before. I am reaching my 1 year in a month.

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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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@ssapp1

I was put on Myfortic and tacrolimus right after my liver transplant. I had horrible diarrhea and headaches. My doctors said it was the Myfortic and switched me off of it and replaced with Imuran, which I have taken before for my autoimmune disorders. Now I am on tacrolimus and Imuran. No more diarrhea. Still get headaches some nights, but not all as before. I am reaching my 1 year in a month.

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Hi @ssapp1 😊
This is the first time I have heard about the drug Imuran as a replacement for Myfortic. It's wonderful to know that the "medical tool box" is filled with several meds that will do the job! Maybe they will discuss both options of Imuran or Myfortic with @bosco17 during the doc visit about Mycophenolate GI issues. Congratulations on your one year anniversary!!

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@colleenyoung

Bosco, I moved your newly started discussion to the one you started about Mycophelonate and Myfortic and GI side effects here: https://connect.mayoclinic.org/discussion/mycophelonate-and-side-effects/

I did this since you were already in discussion about the 2 drugs, effects and possibility of switching with several members.

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ok

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@rosemarya

I want to pop in to this discussion with some information about Mycophenolate.

Here is the Dosing statement for both (links listed below): Mycophenolate Mofetil (Cellcept) and for Mycophenolate (Cellcept, Myfortic)- "The dose of this medicine will be different for different patients. Follow your doctor's orders or the directions on the label. The following information includes only the average doses of this medicine. If your dose is different, do not change it unless your doctor tells you to do so.
The amount of medicine that you take depends on the strength of the medicine. Also, the number of doses you take each day, the time allowed between doses, and the length of time you take the medicine depend on the medical problem for which you are using the medicine."

You can read more about dosing, the Side Effects , and Proper Use -
Mycophenolate Mofetil (Oral Route)
https://www.mayoclinic.org/drugs-supplements/mycophenolate-mofetil-oral-route/proper-use/drg-20073191

Mycophenolate (Oral Route)
https://www.mayoclinic.org/drugs-supplements/mycophenolate-oral-route/proper-use/drg-20073212

I am taking Mycophenolate Mofetil (Cellcept) and I was unaware that each has a different dose prescribes to each medication, and to each different organ.
Thanks for sending me on this search.
@bosco17, @hello1234, @katebw, @myfablife, @joko

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As per my transplant team:
I believe 500mg of Mycophelonate is equal to 360mg of Myfortic ,1000mg equals 760mg, 250mg equals 180mg . Let me know if this conversion is correct

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