Transplant anti-rejection medications. What's your advice?

@tbrigham Hi and welcome to connect. Congratulations on your heart 11 years and doing great. I love hearing stories like that. Im almost 3 now this coming Janurary. I did have a situation last jun 2019 where i was having some blood issues and they needed to cut out one of mine. the Mycophenolate was eliminated to help my immune system fight the 3 viruses i had causing the low blood counts. but i also caught cdif which is not fun and diarrhea is one of the biggest issues. I wouldt wish that on my worst enemy.LOL. so the plan was to start sirolimus but due to the cdif it only lasted a few days and now im just on Tacrolimus.
But for the diarrhea it was determined that i it was due to being on antibiotics which played havioc with my digestion and ultimately i needed to take something to get the good bacteria in my intestinal track better balanced so im on Lactobacillus Acidophilus now to contract the bad bacteria ive been told when your on antibiotics to long it destroyes the good bacteria that keeps the bad bacteria from multiplying and can cause not only pain but diarrhea. Maybe mention that to your doctors to see if that might help. We talked about a anti diarrhea med but for me it was not advised i don't remember why. They gave up on the sirolimus since i seemed to do well on the tacro and i also know once you have had cdif you can get it even easier in the future. Hope maybe some.of that may help with your situation.
Have a blessed day
Dana

@tbrigham
Hello Tara and welcome to active posting. I am very sorry for your series of bad side effects yet congratulate you on 11 years. I have been with my new heart which I have named, Dave, for 11 months now. Two thoughts have sustained me through my much more minor medication issues. First, at least I am alive so that I can complain about whatever it is that is troubling me. Second, and this came from Lisa Trost, one of the heart transplant team social workers, we traded in a large problem (you know what we are talking about) for a series of much smaller problems (you know what those are for you).

Through this first year my medication regimen has shifted ever so slightly. Most changes were to tacrolimus and that has gone up and down from 10 mg per day to 7.5 now. For a long time we just could not get the right levels and when I was running high I had very bad cramps in my hands, feet, and ankles (of all places!). I also take magnesium supplements to counter act those cramps. Throughout those changes all sides were watching my creatinine levels and BUN (blood urea nitrogen) numbers like hawks due to the stress that "tac" places on the kidneys and liver.

We recently reduced my mycophenolate as my white blood cell count was too low.and that has not created any issues.

The worst side effect for me is that the immuno-suppressant drugs have completed the job I started of wearing away any cartilage in my hips so I have a lot of pain at night. But again, I am live to complain about it.

If you are considering any OTC anti-diarrhea aids please consult with your team. I recall that some of them affect the absorption of your meds. They might be okay if you can correctly manage the timing of each. Still, challenge your care team.

Feel free to ping me if you are so moved.
Best always,
s!
Scott Jensen

@tbrigham Hi Tara. Welcome to Connect.

I had the same problem as you had with my immunosuppressants -- diarrhea that was unrelenting. I was switched from tacrolimus also due to my creatinine levels. First they tried having me drink copious amounts of water but that didn't help enough, so then they switched me over to sirolimus. I had been going to water aerobics many mornings but had to give that up for obvious reasons. My team suggested a bulking agent, Metamucil I believe, but that was little help. They said I could take Imodium occasionally but they did not want me to take it regularly.

Mine turned out to be a lactose intolerance but you said you have eliminated dairy. I had been having yogurt frequently in the morning, a salad at lunch with goat cheese, but lactose intolerance never occurred to me until one day I wasn't too bad and it dawned on me that I had not had much lactose. Then we went out to dinner and I had a Caprese salad and an appetizer for my dinner, of eggplant stuffed with ricotta. Whoa, did that give me a problem! I found Lactaid to not be any help at all, but Digestive Advantage, Lactose Defense helps a bit. It's odd though, now there are days I have lactose and have no problem, but if push it the problem recurs. My daughter was visiting last week and I made a big pan of macaroni and cheese for her and her husband and I had some too but had no problem! The cheeses were aged ones that most people with lactose intolerance can eat, but it also had a quart of milk in it.

Bottom line, I can't figure this out! I do know that if I eat foods regularly that have lactose the problem will start up again so I only have a limited amount. Did you eliminate all dairy?
JK

@contentandwell, I appreciate this post. I also am lactose intolerant. As my endocrinologist told me......you don’t have to quit lactose totally....just be wise about it. Choose one......cream in your coffee or an afternoon yoghurt......but not both. She was right. The unrelenting diarrhea as you called it became a part of history for me. I am not a fan of adding another chemical medication to my growing list of pill bottles. Sometimes I think we need to do our own research. I have become a tracker........chasing everything these days. Happy Thanksgiving.....thanks for letting me pop into this discussion. I am glad I landed here.
Chris

@artscaping I too hate adding any medications, even those to aid in the digestion of lactose so I generally avoid it. I have discovered that I can now have Greek yogurt though.

I have a friend who has a severe problem even with a trace of lactose, and now she has developed gluten intolerance too. I’ve found that it is not unusual to have one follow the other. I still use non-dairy creamer and lactose-free milk. I’ve discovered Fairlife milk which has no lactose, plus it has extra calcium and protein! I prefer to make my oatmeal with unsweetened almond-coconut milk, but I’ve switched for the extra protein. I have read that extra protein is important if you have osteoporosis but I’m seeing two endocrinologists in the next couple of weeks so I plan to run that by them.

I’m off on a tangent here, but my PCP thought it wise to get two opinions since osteoporosis is such a serious issue with often problematic medications. Since my osteoporosis was caused by my immunosuppressants and my lactose intolerance was triggered by them, I guess it’s not such a big stretch!
Jane

You know, I hadn’t thought of that......I just might have to resort to that option. We will see next week when I pay a real visit to my endocrinologist. I am working on my list of questions and concerns. Thanks to all of the great contributions on the subject of osteoporosis from members....I have had my bells rung.

Thank you.
Chris

How did you deal with cellcept stomach cramp?

Hi, mmr1984. I am sorry to hear that you are experiencing stomach cramps with your cellcept. Cellcept is an antirejection medication tht many of us transplant recipients are prescribed. It is a powerful drug and a necessary drug for us. I want to share an article that does discuss side effects, as well as the importance of following a medication schedule, and foods to avoid that might interact with medications. - Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects
What has your doctor said about the cramps? Has there been any change in your medications? Have the stomach cramps started recently?

Thanks @rosemary

Thanks. What is the name of the medication it was prescribed to you for purpura?