Weaning of PPI - one woman's story - day by day

So a little about me - 48 year old woman, have had GERD for 10 years, have been on PPI for the past 8. I've been on Prilosec OTC 2 pills a day in the am for 8 years. It was my best friend - my miracle drug. Totally cured my heartburn. I've been in PPI bliss. Until July of this year - just 4 months ago- when everything changed. All of a sudden, over the course of a measly 3 days, I was swimming in acid. Not just heartburn but acid in my stomach so bad I could barely stand it - and burning in my mouth that made me feel like I'd been sucking on a ghost pepper.

I am thin and in shape, have a very low fat vegetarian diet- don't smoke. Drink in moderation. So what happened!?!?! I am in peri menopause- is that a factor??

I ran to my internist who sent me to a gastroenterologist. He did an endoscopy about 12 days into my symptoms and found mild gastritis and esophagitis and said I should try switching ppis on the theory that the Prilosec had stopped working and I should try another. We went to protonix. He also gave me carafate. Neither did jack for me. So then he moved me to nexium 40 mg 2x a day. That is like an enormous dose. And it was only about 50% efficacious. The carafate I totally ditched because all it did was burn my stomach and esophagus on the way down. So now I found myself pumping my body full of nexium for a tiny benefit. I started to really worry that something other than GERD was going on. Doc was too. He tested me for SIBO - was positive. So he gave me this incredibly expensive antibiotic called Xifaxan. I took two courses of that - still no relief. So then we decided perhaps to try to get off the PPI altogether and do some pure testing, for horrid things like Zollinger and also to do pure PH Testing and such. Also - my personal theory that perhaps the long term ppi usage had caused an imbalance or maybe even bile reflux. I want to start from a clear unmedicated place and figure out what the heck is wrong with me. I'm in agony most days - burning mouth, burning chest and horrible stomach pain. I'm convinced that if I were scoped now - which seems imminent- the results would be much more severe as the past 4 months have been constant burning. So I began the slow process of weaning off PPIs - to see where it leads. First two weeks I did 1 pill a day instead of 2. Second week I did 1 day on, two days off PPI. Third week I stopped - that is where I am now- This is my story in the hopes it might help someone else:

Day one: ok, did not have to set alarm an hour early to take PPI before breakfast- that's nice. Feel liberated!! Stomach as usual a hot mess. Burning doesn't seem more than before - still hellacious. Gulp gaviscon advance (which I have to get on Amazon) and get on with my day. By lunch the pain is back- as all of us know, an empty stomach does not help with GERD. But then again neither does a full one. Took more gaviscon. Dinner with a beer helped - I know we're supposed to give up alcohol but honestly, since this pain started, a little bit of lite alcohol has helped me deal with the pain. And abstaining doesn't do anything to help me- so why bother. In fact - none of the diet stuff has really helped me with the exception of low fat- high fat is a killer. But I don't usually eat a lot of fat so that's easy to avoid. I never eat fried food. But I've tried to Avoid the regular culprits- chocolate and caffeine yada yada- but the pain persists. Got thru the day ok.

Day two: ok, I've done 2 days off before so this is ok. It's horrid - but I've been here before. That's why I did the tapering- but man, omg, the burning is really bad. The mouth and stomach are worse then the chest to be honest- the actual classic "heartburn" is the least of my problems. My mouth is on fire and my stomach feels like there are rats in it trying to gnaw there way out. Guzzling gaviscon and mylanta- trying to avoid Zantac because it has the same downsides as ppis for my purposes. Eating small portions and focusing on rice, beans, veg and yogurt. Not helping.

Day three: OMG- just wow. This is why people run back to ppis- today is agony, just abject agony. My stomach rats have turned aggressive and they are joined by fire in my chest and ye old burning mouth. Am using cepacol for the mouth and it helps - it numbs the mouth and part of the esophagus. It gives me a good 20 minutes of pain relief for those 2 areas. Am I being a fool?? Should I just go back to the PPI and screw the experiment?? Or should I just power through and get through what is clearly rebound!?!?! Arghh!!! My only relief is found in sleep - but I fear that will be interrupted by this level of reflux. Stayed tuned. It had to get better- doesn't it !?!?!

Day 5 - I actually feel a little better today, thought I've no idea if that is because I'm improving, or if it's just the usual ebbs and flows of this disease. Have a Halloween party to go to today and as usual, won't be able to eat anything as it will likely all be wine and cheese and chocolate. Ugh. But as you all know, food that aggravates your condition doesn't even look good after awhile - you know it might taste good, but it's just not worth the pain. As I've said, for me it's fat that is the worst, so I will stick to non citrus fruit salad. Hoping my day stays ok.

Day 6 - still feel better- not perfect but better. Afraid to get my hopes up tho. Have begun noticing weird gurgling in my abdomen that I haven't felt before - at least not in recent memory. Wondering if it's something digestive reacting to the acid? The rats in my tummy have been asleep for 2 days and I've not had that gnawing pain - praying it won't come back. But we shall see. In any event, I don't feel I'm worse off without the PPI at this point. I just don't think it was having any benefit. Once I've been off two weeks I will get some tests and we will go from there. Still using my gaviscon arsenal for post meal issues and pre bed issues. I don't know why they won't sell gaviscon advance here in the USA - it's really a good product, though I think my reliance on it has caused a little bit of constipAtion - but it's worth it!! Stay tuned and wish me luck!!

Hi Ivymarie!
Sorry you are going through this...Wishing you the best of luck to control this pain and hopefully heal. I just started ppi's (which I'm not happy about due to the new research) in June for reflux and a small hiatal hernia ( I couldn't imagine a large one , because the pain at times is almost unbearable). A friend of mine suggested baking soda in water , which is sometimes helpful, also I've used digestive enzymes , probiotics and dgl. Sometimes these things are helpful, and I use in addition to the ppi's....tried to wean off my night time dose of Prevacid, but had to go back on it because I caved into having a little iced tea which I paid dearly for for 3 days. (caffeine was my best friend!)
Take care and hoping things get better and better for you!!!
Dina

Hey just wanna say a big thank you for this, this kind of information and experience is very helpful for everyone on here. It's very nice of you to share it with us! Stay strong.

Happy Halloween all - bad day for me I'm afraid. Rats woke up in my stomach- bad pain. Which tells me 1) it wasn't the nexium and 2) the nexium wasn't doing anything to help me. I feel the same ebbs and flows off of it that I did on it. So best to be off since it wasn't doing me any good. Such pain tonight that it makes me think about trying other ppis once this experiment is over. Or getting the linx, though I'm not sure that will help with gastritis. I'm not even sure I understand why gastritis is linked to GERD-- if the problem is my LES valve - why the gastritis?? Anyone have any clue about that?? I keep worrying that this is my new normal- that my life when I did not have to think about my digestive system is over and that this is the way it is now. I honestly feel like I'm mourning my regular life and self. I'm so consumed with this diseases now. Makes me sad. It's Halloween and I am trying to be in the moment for my family - but it's hard with so much pain. Hopefully tomorrow will be better - but given my cycles, probably not.

Hi Ivymarie,
Good luck with the testing....you are smart to get it done. I can totally relate when you say "rats in my stomach"...it's so painful and exhausting.
Hang in there!!
Dina

Day 12: not a bad day - chewing on gaviscon as per usual. Have ordered the ones from Canada without aluminum. We shall see how those work. Have a lunch date tomorrow - worried about what to order at the restaurant and how to avoid fat. Eating out is such an adventure when you're a GERD sufferer.

Day 13: well I'm one day away from being officially off ppis - at least according to my doctor. But I've read posts here of folks who said it took months to get past the rebound. Honestly, I feel I only really had a few days of actual rebound. The PPI wasn't doing much for me though- for those for whom it works, it might be a different story. Today I went out to lunch and I did ok- I got a salmon dish, so not low fat- but it looked so good I decided to chance it. Made sure to avoid all added fat and asked them not to cook it with fat (simple poach). Went ok - It's been several hours and no major pain!! Only had 4 gaviscon today and am doing ok!!

Thanx for your running comentary about your condition. It's been insightful. Given me things to think about.

Good luck to you and let us know what the results of your tests were. You're in my prayers.

Hi Ivymarie,

Good that you finally got better. You can do it.

I have this site below that might help you regarding weaning off PPI. We are all different so some might not work for you. It did helped me a lot.

Now i am off PPI for a year now. Getting way better and got healed. I am eating more (still staying away from too much fat and trigger foods). My lifestyle have changed. I also give glory to God for my healing.

All the best. God bless.

https://www.inspire.com/CAGU/journal/ppi-warning-gastroparesis-delayed-gastric-emptying-proton-pump-inhibitor/

Hi - thank to your inquiring after me. I am much better. As it turns out I don't have GERD. I may have had it when I was heavier, as GERD and fat go hand in hand. But continuing to take the PPI when I didn't need it has damaged my gallbladder - something they don't tell you on the box. So now that I'm weaned off - I'm sooo much better, though my GB is probably permanently damaged and will have to come out at some point. For now, I'm holding my own and just angry at myself for staying on the PPI for as long as I did

Hi Ivymarie...I was taking ppi for many many years until I started hearing buzzing in my left ear, I was also getting a lot of headaches. I got very angry so I started taking the ppi every other day. I substituted with Organic Aloe Vera juice mixed with other Organic juices the results are great. I still get a slight burning once in a while, by breathing thru open mouth it goes away. I have been off this terrible medication for 3 months. I am hoping that in time the ringing in the ear will go away...by the way the headaches are becomes less and less.

Hi Ivymarine, Hope you are well. I am weaning myself off ppis at the moment which is a struggle and wanted to know ask ow you were a few months after getting off them.