KidneyBuzz.com is one of the few sponsored findings I found on Facebook that really had information that appealed & applied to me specifically. It was one of the few sponsored tags I liked on Facebook even if it started as clickbait.
It’s a legitimate web site, but one that was founded by a chronic kidney disease patient. I think the site comes up as sponsored since they have a store within that site. But it’s primarily a website that focuses on relevant kidney issues & news. They talk about dialysis, transplantation, & pretty much anything kidney related. But sometimes, their site has good information for those who (unlike me) don’t have kidney issues, but may be transplant patients.
For instance, this article. When I first started taking sirolimus (Rapamune), I had to be wary of grapefruit interactions. Those interactions will still apply later to my tacrolimus, which will probably be the drug that I will take after my lung transplant. Since these are in the same class of drug, the same rules still apply.
The reason that grapefruit & such enzymes are harmful is because it actually decreases effectiveness of the drug, but can also cause toxicity because it raises the plasma levels. The KidneyBuzz.com article was helpful to me because I was aware of obvious sources, but had no idea that there were “hidden”sources of grapefruit enzymes in certain beverages. This is critical for me, because I do not only have to be wary of them because of the sirolimus I take now; I also take an additional drug for my anxiety that has the same interaction. So any of those amounts could presently pose a two-fold problem.
Luckily, I’ve avoided most of the the hidden “baddies” listed in the article, but had no idea that Sierra Mist could be problematic. Or Stewart’s or Sunkist. That does make sense too because of certain citrus enzymes. For example there are similar problematic enzymes found in seville oranges which are used in marmalade. Also in tangelos (a cross between a tangerine & grapefruit). Even limes are mentioned on some sites as also having similar problematic enzymes so I’ve cut down or pretty much eliminated them too as a precaution, which is tough for me. I love key lime pie & mojitos.
For independent verification purposes, it should be noted that the grapefruit/seville orange connection has been verified in the medical community as well. This study from the National Institutes of Health reports similar findings.
It’s fairly common knowledge about grapefruit & they do tell you this in evaluation as well as when you start sirolimus & it’s printed in that literature. However, what about herbs? Drugs themselves are sometimes easy because there are interaction checkers to run against & doctors will be open about that as well as foods to avoid.
However, supplements & herbal alternatives are dicey and most practitioners are even reluctant to discuss them at all at points. But it can be done & information can be found on drug-herb interactions.
RXList.com has a great interaction checker that will also cross reference herbals & other types of supplements. This is how I found out (a few years after starting sirolimus) that I cannot take melatonin for sleep problems because of the fact I’m on sirolimus.
Some of the herbals to avoid make sense like echinacea because if you’re taking an immunosuppressant you wouldn’t want to combine that with a herbal that’s meant to boost immunity. But sometimes it’s harder to know what if any herbs or supplements to take or if there could be an interaction. I always check with a doctor before I start, but this also is a nice easy way to check & do some homework to be sure nothing is overlooked.
It turns out that there were other herbs that I’m not aware of that definitely are no-no’s with tacrolimus that I had been taking once in a blue moon with sirolimus & probably shouldn’t have been. Turmeric is one such herb. It does work wonders with pain but can increase side effects & plasma levels. I uncovered this now thanks to Memorial Sloan Kettering’s Integrative Medicine section. They have an herbal search that isn’t all inclusive but is detailed and covers almost 275 of them, which is where I I happened to find this tidbit on turmeric.
It can be overwhelming to keep track of at points, but it’s important to do so, both for me pre & post transplant to make sure my drugs are working at optimum & I’m not putting myself at unnecessary risks for problems or unknowingly throwing my levels off. Luckily, I was so used to searching & hunting down this kind of information from past jobs, I’ve just made a list of bookmarks & links to assist me.
Why does someone have to be so anal & diligent about this? Because it can cause kidney & liver damage if toxicity occurs & could also lead to potential rejection or irreversible organ damage after transplant.
Here is a study of a man who drank some Chinese herbal tea & went into toxicity. He had not that much over the course of 3 days with ibuprofen. This was a man who was at least 6 years post kidney transplant. Luckily, he suffered no permanent damage after a 10 day hospitalization.
While one can’t guard against every instance, knowledge is power, & sometimes what you don’t know can in fact, kill you. I don’t say that to be morbid or melodramatic but it’s the truth.
I want to point out that I find merit in alternative medicines & herbs from time to time. I feel use of vitamins also has done a lot to keep me healthy outside of LAM & TSC. But someone has to weigh those decisions to use supplements with the equal weight & care they give in trying any new medication.