I've used and abused many classes of drugs over the years: stimulants, depressants (benzos, alcohol), opiates, empathogens (MDMA, 4-FA, methylone) & psychedelics. I've also tried and quit a vast array of psychiatric medications, many of which were terrible to come off of. For some reason I never thought a stomach medication would be in the same league as meds that affect the mind in terms of withdrawal symptoms, but boy was I wrong.
I've suffered from severe GERD and gastritis since about 2015 when I developed a hiatal hernia. To treat it, I was put on proton pump inhibitors like Prilosec, Protonix and eventually Dexilant, the most expensive and "first-class" drug in this family. The gastro doctor acted like I was lucky to even be able to afford or access this drug because of its high cost. The only difference between it and the over-the-counter options like Prilosec is its time-release function. She said it should "fix me right up". Imagine my disappointment when it didn't.
By this point nothing had helped whatsoever & I was at the end of my rope. A woman in her 30s who's not overweight should not be this disabled by acid reflux. Not only is my diet severely restricted (I survive on rice and crackers at times), I also can't lift, bend or sleep on my left side due to the gnawing pain in my stomach and the hot acid that comes up in my throat. This is a problem that runs in my family and one person has already developed esophageal cancer from it. I even talked to a stomach surgeon about repairing the hernia, but he seemed unbothered and advised that I just stay on the medications as surgery carries its own risks and doesn't guarantee improvement. In some cases it can cause problems of its own that are actually worse than the reflux. Yeah, no.
Risks of Long-Term Use
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| Dexilant 60 mg |
So here I am, three plus years later and still taking proton pump inhibitors. At the time I started taking them, I was unaware that they weren't meant to be taken long-term. Turns out this class of drugs is intended to be taken for a maximum of 8 weeks. Studies have come out that are extremely disturbing in the the past couple decades showing links to everything from "major cardiac events" to pneumonia to dementia in long-term PPI users. But if you dig deeper there's a loooooong and worrying list of possible links to diseases ranging from B-cell lymphoma, liver cancer, stroke & heart attack as well as more well-proven maladies like C. diff & bone fractures in long-term proton-pump inhibitor users.
What the actual FUCK.
Of course my doctors have never mentioned a word of this to me when recommending the medications over surgery or other options. To make matters worse, PPI's have been shown to CAUSE rebound acid reflux in patients who never had heartburn or reflux a day in their lives when given to test subjects and then stopped cold turkey. For those who don't know, rebound reflux (or rebound ANYTHING) is far worse than your original symptoms. So for someone like me who has actual stomach problems attempting to quit these meds, the hellish withdrawal symptoms are almost unbearable. I know because I quit my Dexilant a few years ago to undergo an endoscopy. For 7 days I endured the worst reflux of my LIFE. I could barely sit up and wanted to cry. If I forget to take the pill for a day, I feel awful the following day. At this point I don't know how many of my symptoms are caused by the meds vs. my actual stomach problems.
I'm so mad I wasn't warned about a single one of these risks by any of my doctors who advised me to basically take them for the rest of my life. Short term use is fine; I'd have no issue taking them for a couple weeks for ulcer healing in the future if need be as that's how they're intended to be used. But telling someone my age to take drugs that cause calcium deficiency without even warning me to supplement with calcium is borderline malpractice. These medications are known to cause fractures of the wrist, hip and spine among other serious diseases like C. diff.
To be clear, severe GERD also carries its own risks: gastritis, esophageal damage resulting in Barrett's esophagus (a precancerous condition) & even esophageal cancer in the most severe cases. It can also cause damage to your teeth, adult-onset asthma(!), narrowing of the esophagus & sinusitis. So it's important to treat it. But not like this.
The Long Process of Withdrawal
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| lol. I feel ya little buddy. |
Now I'm attempting to taper down from my daily 60 mg of Dexilant for good due to fears about the long-term health risks. Needless to say I'm seriously concerned about how bad the withdrawal is going to be. My plan is to take one pill every other day for a month and then switch to every 2 days next month, sprinkling some Dexilant beads into my mouth as needed for severe symptoms as needed on the 'off' days. If this proves too hard, I can always go back to the old every-other-day dose for a while. I'll be supplementing with lots of Tagamet, Carafate & chewable calcium carbonate antacids which don't really do much but are better than nothing.
I'm three days into the taper and already feeling the increase in stomach acid. Any little stressor causes my stomach to fill with acid noticeably, as do most foods. This is not going to be pleasant but it will ultimately be better than a broken spine or cancer. I'll update this article as I go. One study said the patients with no pre-existing reflux endured up to three MONTHS of rebound reflux after quitting the medications. 😳
Update 10/20/21: I've successfully tapered to my "every 2 days" plan and things are going a little better than expected, at least compared to the time I cold turkey'd for 7 days. My reflux is not good by any stretch of the imagination, but it's tolerable. I've even been eating some trigger foods like Wasabi peas & spicy soup without spending my days doubled over in agony. There was one "off" day where I had to chew up some Dexilant beads to hold me over until my scheduled dose the following day, but now I'm successfully able to wait the full 2 days. What's interesting is that, at least right now, my overall GERD symptoms are not worse than before I started the Dexilant. This leads me to believe the medication may not have been helping me all that much, though I'll have to completely taper off for a while before I can make that call. More updates to follow.
Update 11/18/21: I'm now down to "every 3rd day" dosing and, while my reflux is not as terrible as I had predicted, I've been dealing with some troubling mood symptoms. Anxiety & depression in particular. I know this is a stomach medication that's not known for affecting the brain but I've been feeling REALLY out of sorts lately and am wondering if Dexilant withdrawal could be contributing. Granted, my life is especially stressful right now but even so, it's not like me to feel this depressed for such a long time. I can only find a few reports in the literature about the drugs causing mental side effects but nothing about their withdrawal making people feel this way. To be continued...
Update 5/26/23: I managed to taper all the way off the meds and STAY off for several months without any increased stomach pain or reflux. Tapering is 100% the way to go here. Everything was great until I was faced with a housing crisis that caused a dramatic increase in my GERD. I was then forced to go back on the Dexilant just to keep the caustic acid out of my throat/mouth & prevent it from wearing down my tooth enamel more than it already has. (My dentist commented on this at a recent visit which terrified me). Just like with the codeine, life situations forced my hand. I'd prefer to be off both meds but stress takes such a physical toll on my body it's not feasible. Blah.
Do you have experience quitting proton pump inhibitors? Any tips or tricks are appreciated; leave them in the comments below. As always, be sure to talk to your doctor before quitting any prescription medication. But I would also advise any newbies to GERD to avoid getting started on these medications unless it's for short-term use only. The long-term risks just aren't worth it.
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