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

@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

@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 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, I'd like to add my welcome and invite fellow heart transplant members into this discussion like @estrada53 @danab @jstoll and @scottij. I believe @estrada53 also has experience with Sirolimus.

Here's another discussion that might interest you:
- Tacrolimus: Temporary Cessation https://connect.mayoclinic.org/discussion/tacrolimus-temporary-cessation/

Are anti-diarrhea medications helping you? Do you work out of home or has COVID changed your work place to your home? That would be a silver-lining, wouldn't it?

Thanks @rosemarya. I appreciate your kindness. Hurray for 11 years!
I started with a 1mg dosing of Sirolimus on Oct 5, 2020 and then they increased it to 2mg on Oct 30, 2020. After I spoke to my transplant team earlier this week, they agreed to let me go back to the 1mg dosing but had to go back 1mg x2 daily of Tacrolimus (Prograf). I am waiting to see if that helps! I did read through all of the side effects before starting the medication, but we all know that medications affect people differently.
Thank you also for connecting me with someone else who had a similar experience!

@tbrigham, I want to welcome you to the transplant discussion group. I would also like to congratulate you on 11 years with your heart transplant, 11 years is special to me because I am 11 years out from liver and kidney transplant.
I don't take Sirolimus but I did read that diarrhea is a side effect with Sirolimus. Here is the Mayo Newsfeed Article: Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
tbrigham, How recently were you switched to Sirolimus? What has your doctor had to say about about a possible remedy?

I want to bring @contentandwell to this discussion. She has shared a similar experience.

Hello! This is my first time posting in this group and I was wondering if anyone else has had consistent diarrhea with taking Sirolimus?
Here is a little background: I am 11 years out from my heart transplant and have been cruising along, living and loving life ever since. For most of my transplant experience I took 2mg x2 daily of Tacrolimus and 180mg x2 daily of Myfortic. That seemed to work pretty well and I did not have any noticeable side effects. Recently my transplant team told me that my Creatinine levels were reaching a level that wasn't good for my kidneys. So they recently switched me to Sirolimus, originally starting me on 1mg and then to 2mg with the goal to get me off of the Tacrolimus. However, this switch has caused daily and repeated diarrhea and abdominal cramping/ pain. I limited my diet and stopped consuming dairy, coffee and soda. And since it hasn't gotten any better, I am really only eating items according along the lines of the BRAT or low fiber diet.

I am reaching out to this group to see if anyone else has had a similar experience? And if you did, how did you handle it? Are you taking an anti-diarrhea medications? Did you ask for a medication change? (I'm hoping that is not just my goofy DNA that is causing me to have these symptoms.) Thanks!

@estrada53 Hi Ellen Im sorry it didn't click with my slow brain that you were on the zoom calls. I also have missed a few lately and probably this week also. But nice to know who you are now here on connect.
Have a Blessed Day
Dana

Ellen,
The Big E
El
The El-stress
El-arama
El-anelli
E,
I also missed last week due to physical therapy on my shoulder and will miss this week as I will be in or rather near The Grand Canyon. I guess I leave a clear signature in my presence I sliding writing. So much for being anonymous. Lol!
Best always
s!

Hi Scott, It's Ellen from our Wednesday zoom meetings! I knew it was you immediately. Please feel free to reach out and stay in touch even though we are on opposite sides of Tucson. Look forward to seeing everyone on Wednesday. I missed last week. Lots of work in my classes. Take care. Ellen