Severe gastric problems- MMF?

[6821green]

I had my kidney transplant in June of 2021 and am currently taking 500mg cell-cept bid. I started to have stomach issues around the 4 month mark, and they have progressed to the point where my daily activities, sleep, and quality of life is impacted. Up until this point, I have felt terrific!

I have tried eliminating food groups, which at first was helping, but now no matter what I eat, or when I eat, I experience severe burning pain in upper right abdomen, bloating and gas, and nausea. My transplant team did not respond to me in a timely matter when I contacted them back in July. My local nephrologist recently suggested I ask my team to switch me over to Myfortic.

Has anyone here experienced such gastrointestinal symptoms?? What did you do to relieve them? If you are on Myfortic, is this medication easier on your stomach?

Thank you for any suggestions.

[PostivelyJo]

I’m about to change from MMF to Myfortic Acid . My Nephrologust doesn’t think this will help and wants me to take Immuran. I’m going to try Myfortic first as it’s less of a change for my body .

Drs seem reluctant to bc accept that these drugs have punishing side effects and reluctant to change meds. I see their point of view of course. The safety of the transplant first. But !!!

I’ve managed to get off prednisone after 3 years, it took a lot of asking .

Stomach pain is debilitating . Best of luck with things .

[6821green in reply to PostivelyJo]

Thanks for sharing your story with me. I wish you luck and healing as you change to Myfortic. My transplant team is reluctant to do any switching of meds for now. This is a journey with its own unique bumps in the road. Keep advocating for yourself!

[Janet_wyatt]

Hello,

I took cellcept after 2009 transplant, I had nausea and continued to take it till 2014, I had started vomiting and couldn't keep anything down, significant weight loss. I finally got switched to azathioprine/Imuran. I have done great since. 13 years in December. Best of luck to you!

[6821green in reply to Janet_wyatt]

Thank you for your reply to my concern, and I am happy that the medications you switched to have helped you. May you continue to have many health years with your kidney!💚

[blackkat2]

Hi. Yep, lots of stomach issues. I've taken mycophenolate sodium (Myfortic) since transplant (4.5 years ago) but I also take lots of other things, including a B vitamin and metformin, both which are known to cause stomach upset. My gastroenterologist recently discovered that my pancreas wasn't producing enough of some digestive enzymes and started me on Creon, which has worked well for my stomach problems.

[6821green in reply to blackkat2]

Thank you for taking the time to reply to me. Yes, I have learned stomach issues are a major side effects of many medications and supplements. I have held all of my supplements for a week now in hoping to eliminate anything that might be contributing to the pain. Thank you for your advice. I wish you well as you continue your healing with the Creon.

[WYOAnne NKF Ambassador]

I had horrible diarrhea until my transplant team me switched to name brand MYFORTIC. A week after the switch I was already doing better. They found that generic Cellcept was harder on your stomach. They also said that the generic form is just a little different that the name brand. My nephrologist had to write my mail order pharmacy a letter that I could only take the name brand form - MYFORTIC.

To this day, some 23 years post transplant, I still take MYFORTIC 360 mg twice a day.

Best of luck to you and don't be afraid to switch to Myfortic.

[6821green in reply to WYOAnne]

You are to be congratulated on the many years you have maintained good health with your kidney transplant! Thank you for sharing your personal journey with Myfortic. At this time, my transplant team is reluctant to switch me, but I am learning more about what foods/activities are causing the painful episodes.

[WYOAnne NKF Ambassador in reply to 6821green]

Please remember to be your own advocate! You know your body better than any body. If you continue to have issues, strongly ask if you can't try NAME BRAND. It made such a difference in my quality of life.

[AENEASavc in reply to WYOAnne]

🥰

[homerontherange]

Hi there, I had my transplant about 20 years ago and was on CellCept at the beginning but I soon started having reactions to that drug, specifically severe stomach cramps and diarrhea. They tried lessening my dose but it had no effect. They finally decided to just discontinue it altogether. Many years later I had another nephrologist suggest going back on it to see if I could tolerate it and I unfortunately had the same results, so we discontinued it again. I would discuss this with your transplant team and see what they come up with, there may be a drug now that can counteract those side effects you are having. My younger brother was on Myfortic with little to no gastric side effects so it might be worth a try to switch if they feel that is safe for you. As a side note; ask lots of questions and educate yourself as much as possible. This is my second kidney transplant, my first lasted 21 years and that was with prednisone and imurane as the anti rejection meds. God bless and good luck. ❤️

[bluekidney]

Hi I have a similar situation as yours. I was transplanted July 2021. The first 11 months all was ok no issues with Cellcept. I then started getting mouth sores and bad nausea a weird uneasy feeling spoke with the transplant team they lowered cellcept 750mg BID. Nausea persisted then lowered to 500mg until they changed it to Myfortic 540mg BID in August. Well I started getting nausea again but not as bad as with the Cellcept my transplant team lowered Myfortic again to 360mg BID last week and nausea seems to be getting better but the nephrologist suggested I go see a gastroenterologist because it may be an unknown GI issue. Although he did say Myfortic is also known to cause GI issues but it is still much better than Cellcept. Hope you can get some help from your team.

[6821green in reply to bluekidney]

Wow, our transplant journeys are amazingly the same, as I have found out from this forum, many others have also had GI problems with taking Cellcept . My dosage was reduced last December after my WBC count would not rise ,( even after multiple neupogen injections.) For now, things have calmed down a bit, so fingers crossed. My team is aware I have requested to be changed to Myfortic, but they are still digging in their heels. I have always been an informed patient and extremely involved in every aspect of my medical care. Too often, the "traditional" medical community sees my questioning and advocating as a threat to their authority. It just depends on who you are dealing with. Thank you for your supportive response.

[Parkerbarker]

I feel what you're going through because I started with IBS before transplant so very sensitive guts and gi and the medications were killing me I literally didn't eat anything for 3 months cuz every time I'd start to eat I get nauseous but the diarrhea and cramps were the worst ever I'd be on there every 20 minutes on the toilet I couldn't leave home cuz unless there was a toilet tied to my ass there's no way I could go anywhere it was torture going for blood test all the time because I was like oh my God I'm going to crap my drawers one of these days and the transparent team just didn't address it like they should because it's just like they think oh you should just suck it up and that's the way it goes but I've always been sensitive to drugs like even vitamins I'll get like burning in my stomach and stuff and I'm I'm Brazil but I was on right out of surgery the microfenalate 360 mg two tablets three times a day and then finally after complaining and complaining about this diarrhea they switched it to two times a day but I still had to take buscopan and low provide which I discovered myself on the really bad days and then they had my tackerel too high so that was causing issues too every drug that I've gotten I've had to adjust because I know my body and they're always overdosing me because they go by my weight and don't take into account how sensitive I am to any drug so they always overdose me so now after almost 4 months of pure hell where it was so bad that I thought I would never get a kidney transplant again because it was so torturous going through that I finally got my meds and not because of them but because of me bugging them and saying let's try this let's try this let's lower this this and this is correlating so now I'm on one and a half of the three 360 tablets of the microphenolate twice a day so instead of taking like a total of 14 20 mg a day it's like a thousand and something grams a day can't know off the top of my head but and my tacro was cut way back cuz it was making my kidney toxic and the stupid doctors weren't following up properly like seriously you really have to be an advocate for yourself in these situations and now finally in the last two weeks after fighting tooth and nail to get things adjusted I'm finally feeling like a normal human being I still have bouts of diarrhea once in awhile I'll take their low provide in the bus can to stop the the cramping but that's usually if I eat something a little bit too rich cuz my stomach still from all that time of not eating and being so inflamed from those drugs but it's a lot better now so keep pushing for yourself and be your own advocate.also i will send a picture of the delay release mycrophenlate i take which is easier on gi too

[6821green in reply to Parkerbarker]

My, you have really had a tough and painful journey of suffering. I am so sorry you have had to endure these many trials and challenges. Recently, I have been getting up earlier to eat a little breakfast and pushed by immuno drugs back a half hour. This, along with making some changes in my diet, have eased the symptoms for now. Thank you for sharing your story with me. Reading from people who have experienced the same GI issues makes me feel that I am not alone. Best to you!

[Parkerbarker in reply to 6821green]

Yes but now that my tacro was reduced and my macrophenolate too i am almost back to normal,can eat again diarrhea once in awhile but not upteen times a day and puffy face down,now if my hair would come back.

[6821green in reply to Parkerbarker]

I, too, experienced the hair loss and thinning, starting around 5 months post-transplant. This is a troublesome side effect to accept, but I know many people experience it. Here is the product I found that has really worked for me. Routine Wellness shampoo and conditioner. After the second application, my hair no longer came out in clumps after showering/combing and brushing. It has no sulfates or harsh chemicals that most hair and skin products contain. You need to follow the application instructions, rinsing shampoo in tepid water and rinsing conditioner in cold water to get the best results. I tried taking Biotin and used 3 different biotin hair products, but Routine Wellness has really worked for me. I also purchased the hair serum, too. It is amazing how quickly my hair loss slowed and I have gained some new growth, too. I also tried to not stress about it, because this can just make the loss increase. Best to you.

[Parkerbarker in reply to 6821green]

Thks😊

[AENEASavc in reply to Parkerbarker]

Try a wig a hair piece. I have been wearing a wig for years because of hair loss. It has always looked natural and I receive many positive comments about my "hair".

[Hawk12]

Agree with the Myfortic - it has helped me plus “tincture of time”.

[6821green in reply to Hawk12]

Thanks for the great reminder....."tincture of time"....the three best words as a piece of advice for anyone on their transplant journey! Glad you found the medication that works the best for you.

[BabyTee]

I started on Myfortic and sometime between 3 and 4 months I started having horrible diarrhea about 6-8 times/day, but never pain. In case you switch to Myfortic, I'll tell you what helped with this. Metamucil tablets, 5/day before I went to bed (so I could sleep through the night). Also, I make applesauce without the skin and freeze 1/2 cup in each muffin tin cup. Then put the frozen applesauce "Muffins" in ziploc bags. 4 or 5 days per week I have 1/2 cup of white rice or applesauce, which seems to help, as well. I know these are carby for "medicine", but that is what I have found that works.

Best wishes on finding a good solution for you.

[6821green in reply to BabyTee]

Thank you for all of your practical suggestions. The applesauce idea is a great one! I have been keeping very close track of what I eat and trying to eliminate trigger foods from my diet, replacing with good probiotics and eliminating all sugary foods as much as possible. Rice and noodles have been soothing foods since right after transplant. We just do what we have to do to ease the symptoms and be continually grateful for the amazing gift of a new kidney!

[WYOAnne NKF Ambassador in reply to BabyTee]

If you are still having diarrhea issues talk to your doctor. They may try reducing your dose, or switch you to another immunosuppressant.

[6821green in reply to WYOAnne]

Thank you so much for your continued interest in me. I have made some major changes in my diet, concentrating on eating more pro and pre biotic foods to help with my gut health. Avoiding all sweets and caffeine has also helped, along with eating smaller and more frequent meals. I am now getting up early to have a small breakfast 2 hours before taking my immunosuppressants and that has also relieved the stomach issues. After a trip to our local ER in late October for extreme abdominal pain, we were relieved to know everything was normal following a clean CT scan, bloodwork for any inflammation markers was negative, and all bloodwork and urine tests were normal. Patient advocacy has been almost a part-time job for me since standing up to the medical establishment over 20 years ago when my aging parents began to suffer from horrendous side effects from unnecessary medications and horrific medical practices. I do not go into any medical situation without being armed with sound and well documented scientific information. It is my duty as a patient to seek out all available treatments and question with boldness whenever deemed. Needless to say, my medical charts are probably flagged to the hilt!! The respondents on this site have been so very supportive and helpful, especially when the nephrologist on my transplant team told me he had never heard of a patient suffering such GI effects from being on Cell-Cept...and we are talking a major research hospital! Could it just be because I was the one (how dare the patient?!) suggest an alternative drug might be helpful to me? I will never back down from any person in the medical profession to fight for myself or someone I loved and care for!

[WYOAnne NKF Ambassador in reply to 6821green]

Just know...you do not have to suffer with diarrhea!!! I was outspoken to my docs and they had to listen. I am living well now some 23+ years post transplant.

Be well!

[Jayhawker]

applesauce and rice are two of the four foods recommended to calm diarrhea: bananas, rice, applesauce, toast (brat). So, it makes sense that they would help some.

Jayhawker