I lurked about on these boards for months after being (wrongly, it turned out) diagnosed with GERD and a suspected ulcer in August 2013. I repeatedly read the threads pertaining to curing GERD and coming off the meds. I was so depressed at the prospect of having to take a PPI and all of the attendant problems that taking this class of drugs can lead to. This is what happened to me and how I fixed it:
In August I started to get burning pains in my stomach and in my shoulder blades. I didn't have any reflux at this time whatsoever. My PCP immediately put me on omeprazole to see if whatever ailed me responded to no avail. This is only to be expected since it would seem the issue was with my gallbladder not my stomach. Anyhow, she also suspected a possible ulcer and wanted to heal that if I did have one. I diligently took the PPIs (tried lots of different ones) until a HIDA scan earlier in the 2014 showed that my gallbladder ejection fraction was only 4%. I also had an endoscopy that showed a 1cm hernia, very mild esophagitis and mild gastritis. I decided to come off the PPIs in March 2014. Remember that up until this point I had never experienced reflux. I'd had mild heartburn while pregnant. That's it. I stopped the PPI cold turkey when I ran out, and the results were hellacious. Acid the likes of which I have never felt. I immediately went out and bought some OTC omeprazole. My stomach PH must've gone from extremely acid to incredibly alkaline at whiplash speed since I was instantly sick. Vomiting was really odd since I was bringing up this alkaline liquid. It made me realize how powerful and unnatural PPIs are. I determined that I would get off them the right way. It's been a slow, long, painful slog but I've done it and have been reflux free for two weeks now. Here's what I did. Keep in mind I never had reflux in the first place so this may not be the case with you. However if you're suffering through the hell of reflux rebound hypersecretion my experience may help you. There have been a couple of studies on how PPIs raise gastrin in blood and lead to massive over secretion of acid when the drug is withdrawn, for example: http://www.ncbi.nlm.nih.gov/pubmed/15679764
However, there seems to be remarkably little research on this considering how many people must be suffering from withdrawal from these drugs. I do believe PPIs have an important role to play for those with ulcers and extreme GERD but I would avoid these drugs if possible. These drugs, doled out as if they are the most innocuous thing in the world, can and often do cause the very condition they ostensibly cure.
- I started tampering my dose by 5mg every two weeks. My pills were enterically coated so you're not meant to do this but I just got a pill cutter and did it. I was on 40mg originally and each step down was unpleasant but not unbearable. I used chewable Gaviscon tablets from the UK when it got awful. I drank lots of ginger tea and sucked on lots of DGL licorice tablets. Do try different brands since some are awful and some taste just fine. Aloe vera tea was also quite helpful. I couldn't stomach the ACV cure but I did eat lots of pickles. I learned coffee was the very devil and have just had to switch to tea in the mornings (not so hard since I'm British).
- The big change came when I switched entirely from a PPI to zantac in May. I was okay for about a week and then the acid came with a burning vengeance. I got really serious about this since the acid started burning my vocal chords and I lot my voice. This is a disaster for a university lecturer. I had to get a wedge pillow and slept at an incline for 6 weeks or so. Don't try to do this with pillows. The wedge is okay once you get used to it but I'm rid of it now. To control the acid I totally cut out coffee, wheat and diary. It's easier than you think. Switch to rice or shirataki noodles. Try almond milk, get soy tea lattes at Starbucks. I was on 150mg zantac twice per day until a couple of weeks ago when I started to feel much, much better. IT TOOK FOUR MONTHS FOR MY GASTRIN / STOMACH ACID LEVELS TO RETURN TO NEAR PRE-PPI LEVELS. I was on PPIs for about nine months all told. This was the kind of information that I desperately needed while withdrawing from the PPIs. Not knowing how long the unpleasantness would last (indeed, if it would ever end) was extremely demoralizing. There were several times during the first three months that I seriously considered taking a PPI to get rid of the burning. I flushed them down the toilet one time to avoid this and then gave them to my husband to hide another. I didn't get rid of them entirely just in case I woke up with serious throat burn and was afraid of the damage.
- In July I did a Dr Schulze's colon cleanse for 10 days. I don't know if it helped but psychologically I felt like I was taking charge of the situation. Check out this website for some good advice
This website also helped and I re-read the comments when I was feeling like the burning would never stop: http://www.musingsofahousewife.com/how-i-got-off-nexium-for-good.html
- I also tried to get on top of stress over the summer. I'm a tenure track professor in a publish-or-perish situation so I'm really anxious at the moment. However, there were times I would've willingly traded any of my academic success for the burning to stop so that rather put it in perspective.
- supplements. These are what I've taken over the past months that have, I think, really helped heal my tummy: DGL (capsule form); Pepzin GI (Japanese medicine); calcium/mag/vitD liquid supplement (to make up for any absorption issues caused by PPI); vitamin B12 lozenges; MASTIC GUM (very helpful); at night I often took high dose Melatonin (there are a few studies that show this can help with the functioning of the LES).
I have reintroduced wheat with no problem. I'm off milk but I do eat cheese. I can eat very spicy food and drink wine (I just ate really spicy Chinese chicken and a glass of red wine and am totally burn-free). I avoid coffee like the plague. The burning is instant if I go there. I gave up alcohol for a bit but I honestly can say it didn't really seem to affect me. In fact, on days when the burning was really horrid I'd often have a few glasses to calm down and forget about it rather than hitting the PPIs. I am now on 2x75mg zantac per day. I'm going to step it down by cutting my nighttime dose in half starting next week. I should be off by Halloween (apparently though there is a bit of rebound with zantac it is as nothing compared to the PPIs). Taper down VERY SLOWLY. It's better it takes you months than the withdrawal being so bad that it drives you back to the PPIs.
To reiterate: if you didn't have reflux before and withdrawing from PPIs causes it please try to get off this medication for good. Otherwise you'll be stuck in a vicious cycle of dependency. This would be horrible even if the PPIs didn't have nasty side effects but they do: malabsorption being the worse for me (I have folate absorption issues anyhow without PPIs interfering with the process). Don't despair on those days that it seems impossible. YOU CAN GET THROUGH IT. It's not easy, it's not pleasant, but trust me when I say it's really worth it. I feel so happy to have broken free from PPIs. I felt so prematurely aged (I'm only in my mid-thirties) at the prospect of being on these drugs for the rest of my life.
This problem is going to only get worse as OTC access to PPIs increases. I was enraged to see that Nexium recently became OTC. I want to go up to people in Walgreens I see picking it up and warn them about the dangers of taking these like Tums. This is not a quick and easy fix. Tell your friends: avoid PPIs at all costs, don't take them unless you really need them. Tell your doctor if you do get rebound reflux. The more people that report this the more people will know it really does exist. I had two gastroenterologist pooh-pooh the idea when I mentioned it, blaming "underlying GERD" that had developed while I was on the PPI. This is total BS. The drugs caused it. I got rid of the drugs. I slowly, slowly got rid of the gastrin. I am now better. I wish you the best. Don't give up. Good luck.