Switch from MMF to Mycophenolic Acid

[6821green]

Hello, readers,

I am 2 years post-transplant, and after many months of suffering from abdominal pain post-eating, my nephrologist at the transplant center agreed to switch me from MMF to Mycophenolic Acid, 360 mg twice daily.

Within a week, my GI symptoms had almost completely disappeared, and I was thrilled that the new medication eased the pain. Unfortunately, after just a few days of feeling good and having my quality of life restored, the severe abdominal pain has now returned.

I have tried all sorts of diets and modifications, and now it seems it does not matter what I eat, the sharp, burning pain just to right and near my navel area has returned, not only after eating, but now more persistently. Bloating, gas, and occasional nausea are also present.

Nothing is relieving my symptoms, including trying many different home remedies. I do not run a fever. Currently, I also take 5.5 mg Tacrolimus daily, Synthroid, and Depakote.

Has any one out here experienced the same symptoms?

Does it take more time to adjust to the EC-MPS?

Could I be suffering from another conditions/ side-effect from the immunosuppressant drugs?

Before I make contact to my team, I was hoping to hear from others in this forum who have had a similar experience. Thank you, in advance for your assistance.

.

[WYOAnne NKF Ambassador]

I am now 23+ years post transplant. I had horrible diarrhea everyday. After about 18 months post transplant a very smart pharmacist told me my problem was due to the generic form of my immunosuppressants. My transplant center switched me from Cyclosporine and Mycophenolate Acid to name brand Neoral and Myfortic. After a week, it was like a miracle. Cramping, bloating, nausea and diarrhea all stopped. To this day I still take Name Brand . For me at least it was that little bit of difference from generic to name brand that made a difference. Sometime it is as simple as a coloring they put in the medicine.

Might want to give it a try. It is not an uncommon problem.

[6821green in reply to WYOAnne]

Thank you so very much for your reply and advice. If things do not turn around, I will suggest taking the brand name drug. I am very appreciative of you taking the time to respond to me.

[WYOAnne NKF Ambassador in reply to 6821green]

If that doesn't work for you, you may have to switch to a new immunosuppressant.

Here's hoping! Hugs!

[6821green in reply to WYOAnne]

Thank you, again, for your positivity and support!

[Jamok]

Hi, I completely understand your struggles with this drug! I too started with MMF and had horrible bouts of pain with some diarrhea. They switched me to Myfortic, and at first, it seemed to do the trick but the cramping now with constipation came back with a vengeance that lasted over two weeks. I did do a FOD map diet for about a week and it seemed to at least bring down some of the inflammation. I switched to gluten-free cereal/bread, and lactose free dairy products. I avoid all cruciferous vegetables, onions, legumes and nuts because this will definitely trigger another bout. After 3 1/2 almost 4 months of this, I am being switched to Sirolimus. But I cannot get off Myfortic until Sirolimus gets to a certain trough level and it’s taking its time to reach that. Every day I have a nondescript mild GI discomfort and I feel like I’m going to start another bout of serious cramping.

I would give the myfortic or the generic Myfortic a chance because it has worked for a lot of people on this site. I already struggled with IBS and I have left sided diverticulosis which showed up on the CT and yet my surgeon still put the kidney on that side which I still can’t understand because I do think this might have contributed to some of my G.I. issues.

I hope you find relief!

[6821green in reply to Jamok]

Thank you for taking the time to tell me your story. When I first made the switch in the middle of July, there were 5 days of no symptoms, but then the pain came back with a vengeance for an excruciating 10 days. I, too, was on the FOD map diet, at the suggestion of my GYN last summer. Avoiding the foods you described above gave me some temporary relief. However, things progressed to the point that any or everything I ate would start the post-prandial symptoms. I know there has to be some sort of damage to my GI intestinal track as a result of taking the MMF. Following a low inflation diet for 2 weeks finally straightened things back to the point where my quality of life has been restored. Yet, I continue to be extremely cautious about the foods I consume. Eating smaller meals more frequently has helped, too.

It is unfortunate that the transplant team did not take my complaints more serious earlier than they did. It is almost unfathomable they would not have recognized the problem as the MMF side effects. (We are talking a huge, highly recommended and globally recognized medical center.) My local nephrologist had suggested the Myfortic switch last October, but the prescribing transplant doctor would not budge or even acknowledge the MMF was the culprit! ( a little power play, I fear.) When I first described my issues on this forum some months ago, many patients were on board to suggest a change in medication.

Thank you for your sincere interest in reaching out to help me. I am grateful for people like you and many others here who give support and share advice. Good luck with the switch to Sirolimus. It can be apprehensive when having to make any change in routine. God bless you .