Many of us, myself included, have GERD or gastroesophageal reflux disease as a co-existing condition alongside our mast cell dysfunction. We are often prescribed drugs to take daily called proton pump inhibitors or PPIs.
What exactly are PPIs? According to Wikipedia:
Proton-pump inhibitors are a group of drugs whose main action is a pronounced and long-lasting reduction of gastric acid production.
They are deemed “safe” to use for us as mast cell disease patients but how safe are they for people in general? Especially when used long term?
There’s some concerning data out there about PPIs. A study a few years ago showed an increased risk of dementia in patients who took these drugs on a regular basis. However, if you look carefully it’s a study only in the elderly population and even the researchers admit that the connection is not exactly a clear cut one:
But German researchers found that people 75 or older who regularly take the medications had a 44 percent increased risk of dementia, compared with seniors not using the drugs. The study only found an association, however, and not a cause-and-effect link.
Then there is the latest research, which truly is alarming. From Washington University School of Medicine in St. Louis:
Now, a new study from Washington University School of Medicine in St. Louis shows that longtime use of the drugs also is associated with an increased risk of death…
…for the study, the researchers examined medical records of some 275,000 users of PPIs and nearly 75,000 people who took another class of drugs – known as H2 blockers – to reduce stomach acid. The research is published online July 3 in the journal BMJ Open.
“No matter how we sliced and diced the data from this large data set, we saw the same thing: There’s an increased risk of death among PPI users,” said senior author Ziyad Al-Aly, MD, an assistant professor of medicine. “For example, when we compared patients taking H2 blockers with those taking PPIs for one to two years, we found those on PPIs had a 50 percent increased risk of dying over the next five years. People have the idea that PPIs are very safe because they are readily available, but there are real risks to taking these drugs, particularly for long periods of time.”
So clearly there is reason to be concerned if you are a mast cell disease patient who is taking PPIs regularly, like so many of us are. I’m personally not on one but I do take a high dose of the H2 blocker ranitidine daily so I’ll be looking into studies on its long term use/effects now that I’m aware of the risks and warnings for PPIs. I see my doctor tomorrow and I’ll bring this up with him, too.
It’s very difficult when you have a disease that requires one or more maintenance drugs that come with their own set of potentially harmful side effects. It’s a bit of a gamble and can be like trading one devil for another if you lose, I suppose.
Anyway, I thought a warning was in order after reading this. Good luck, and remember, we’re in this craziness together!