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Transplant anti-rejection medications. What's your advice?
Transplants | Last Active: Apr 1 4:58am | Replies (320)Comment receiving replies
@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
Replies to "@tbrigham Hello Tara and welcome to active posting. I am very sorry for your series of..."
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@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