Prilosec/PPI withdrawal

I'd like to hear from others who have stopped taking PPI's after many years on them. I just had an endoscopy (last week) and the GOOD news is that I have NOT got a hiatal hernia -- which I was told 10 years ago or thereabouts, was my problem. I produce way too much stomach acid -- and went on Nexium and then OTC Prilosec for the past few years --- after last week's test, I went off the PPI because i've been reading about gastroparesis and how PPI's can exacerbate or even cause this condition. Meanwhile -- I'm still producing too much stomach acid -- but, actually, I DO feel better -- no heavy "stone" in the center of my tummy 2 hours after eating. No excess gas or belching (stopped drinking carbonated beverages too). But this acid problem is for the birds. I'm starting on a DGL regimen soon -- suggested by the surgeon. He also recommended 2 tbsp of apple cider vinegar a day for 3 days consecutively and said that would take care of the acid problem. Didn't work for me......

Report post

11 replies. Join the discussion

Hi,

There has been a lot of talk about coming off Prilosec lately which I think is great because they are so heavily over-prescribed. I was put onto Prilosec when I was in high school because I started getting heartburn every now and then and I've been on it for 8 years! That's way too long to be on a medication...especially one that's only supposed to be taken for 8 weeks. I don't really think that acid overproduction was my problem to begin with. I've taken as much as 60mg/day when my GP started to as little as 10mg/day before my GP started...all with the same level efficiacy with suppressing heartburn.

I'm currently working with my GI to start coming off Prilosec. His major recommendation (and similar to those I've also ready about online): TAPER OFF THEM SLOWLY. I reduced my dose from 30mg/day to 20mg/day and stayed at 20mg for almost a month. I reduced to 10mg/day last Monday and will probably stay at this dose for 3 weeks..after which time, I will discuss how he wants me to completely come off the Prilosec. From other people out there they've used DGL Licorice and Aloe Vera juice to help soothe and protect the stomach. Also, I've heard that other people's GIs have recommended taking Rolaids Anti-Gas/Antacid tablets as needed during the taper. And another individual was recommended by his GI to switch from Prilosec to OTC Pepcid, which significantly less strong then Prilosec.

In the end my doctor didn't like that I had been on the medication for so long. I didn't also. I've thought all along that taking something that suppresses the natural operation of the stomach for so long would have a negative effect on the stomach...perhaps even contributing to my GP. Do you know where you've read about acid inhibitors contributing to GP? I would love to get my hands on some of that material and learn more about it.

You should remember that most likely you will experience some additional pain and discomfort during the taper. I switched to 10mg a few days ago (~5) and had ~2/3 days of additional pain in my stomach and just now its starting to go away. I imagine that I will experience the same thing when I completely off. That's why I'm reserving the supplements like Aloe Vera juice and DGL until I really needed them for the completely stop. I also wanted to do a little experiment to see how severe the discomfort would be with just changing my Prilosec doses.

I hope this helps.

Sam in VA

Report post

I have gotten off of the ppi totally. I NEVER want to go back. It was real hard at first. I found out that my stomach was soooo messed up from bad ph levels to finding out I had candida (overgrowth of fungus). Then because my whole system is week (leaky gut) I have developed minor food allergies. I am on an meat, veggie, nut, oil, butter diet. I have cut off fruits for now because they made me nausea. I am going to a chiropractor that is helping me through what is causing my slow stomach and weak system. She said the first step is getting off of the acid reducing meds. I have improved since I have slowly gone through all this the past 2.5 months. I was on ppi's for almost 2 yrs. I had to keep on changing b/c they weren't working to different brands; Nexium, Protonix, Aciphex, Prilosec, Prevacid... all of them) they would only work for 2 months and then I would have to change again.

I went cold turkey b/c I freaked out what was going on with my body. I lost my appetite and food did not look good to me at all. I went for 3 days without ppi and then I was shaking sooo bad I had to take one and I felt like I was on heroine. After that initial week, it got better. I ate small meals and took DGL tabs, and Aloe Vera Juice. And something call Acid Reduce enzymes. All very helpful.

Now I take Aloe Vera gel, digestive enzymes, pancreatic enzymes, vitamin supplements, and slippery elm root mixture to heal my tract. I also take a little L-glutamine to heal as well.

My doc says I got a few months to get half better. But I will be on this diet for the next 6 months.

Hope all goes well for you.

Darla

Report post

Hi,

I was on 2 different PPIs before I got my endoscopy. My GI told me that I had damage to my esophagus despite being on Pantoloc at the top dosage. So I figured, if it wasn't doing me any good, and I didn't feel any heartburn, I was just going to come off it. I was so sick at the time that the withdrawal probably just became part of my general 'feeling terribleness' (I believe that severe GP with daily migraines could mask just about anything!)

At the same time, I began a course of Acidophilus (due to being on antibiotics) and began a liquid / small meals diet. I had a liquid meal 6 times a day.

I saw a big improvement but now I wonder if it had more to do with coming of PPIs than anything else. Does anybody out there have info on the PPI / GP link?

Now I just take Tums when I feel I need it. And my GP isn't as severe.

I wish there was more known about this disease.

Best wishes to all,
Rio

Report post

Rio,

Im working at coming off Prilosec which I have been on for over 8 years! It's been a VERY slow process as I taper down. But with each reduction, I have noticed that there hasn't been any additional heartburn. With each reduction I have a few days of additional abdominal discomfort but nothing too major...I just need to take it easy.

I was wondering how long it took for you to start feeling better again after you stopped the PPIs completely? Was it months, weeks? Just curious. Thanks so much.

Sam

Report post

Hi Sam,

i was going through a really rough time back then. i had come off several medications at the same time, over a period of months. However, I did come of my PPI cold turkey and didn't remember it as a particularly bad time but I was unable to hold down liquids and had chronic migraine for 4 months at that time. Coming off my PPI didn't seem to make much of a difference either way.

Basically, I was just so sick that I didn't know any better. Bad relationship with my gastroenterologist...If your gastro suggests that you come off gradually, i wouldn't recommend trying the alternative.

Sorry I can't be more helpful on this one.
Rio

Report post

There have been several post recently about coming off a ppi. If you stop taking meds. for reflux then what do you do about it? I have horrible reflux. I can't take several of the reflux meds, because all of my meds. go into my j-tube and so many of the reflux meds. have granuals in them and will clog my tube. About 6 weeks ago I had a scope done to check my tube, and my stomach looked horrible, and after my surgeon saw the pictures he went and called down to the pharmacy and talked to someone who told him they would make me a compound of something that wouldn't clog my tube, so I was switched to that. My surgeon sees inside my stomach several times a year, and said it looked even worse than it normaly looks. I was awake for the entire scope, so I saw how bad it looked. Well, I "crashed" again starting 3 weeks ago. I've been in the hospital the last two weeks, and got out yesterday. I've been dryheaving so much that there is constantly blood in the bile that comes up and coming out my g-tube. They doubled the amount of the compound, the week I started getting worse. It isn't tons and tons of blood, but it's in every bit of bile no matter if I throw it up or it comes out my g-tube. I can't be on nothing, because my reflux gets so much worse. It has ruined my teeth. My orthodontist said that if he didn't know about my stomach problems he would think I was bulimic after seeing my teeth. I hadn't been to the dentist in years, because with feeling like I'm going to throw-up anyways, I don't want hands in my mouth. I finally went to the dentist and have 4 cavities, and I've never had any before. The dentist said they looked like they were from reflux, because of where they were and the way they looked.
Anyways, my question is, what do you do about your reflux if you aren't taking any kind of acid suppressor?
Char

Report post

Char,

I am glad you are out of the hospital. I too have to take a PPI, without it I vomit 3 times more than without it. I am not crazy about being on all the medicine, but I had rather be on more medicine than to have no life at all.

Charlotte

Report post

Hi Everyone. I don't go on this site much anymore as I have had knee replacement surgery and find it hard to sit at the computer but I just wanted to reply to the subject of PPI's. I too have been taking them for more years than I can remember, the current one being 40mg Nexium. After reading Sammieduke's comments some months ago I took myself off them but got very sick and after two weeks started taking them again. I tried the Enzymes but got really bad cramps from them so I have decided that I have got to live with the GP and try to just get on with life as I have decided against the Pacer surgery. So sorry to hear that you have been through such a rough time lately Charity and hope that you are now feeling better. Good Luck everyone, I hope you all have a wonderful holiday season and to my Christian friends, Merry Christmas. I wish you all a better and healthier year ahead. Mags

Report post

Mags,

Sorry to hear you had a rough time coming off the Prilosec. I sort of feel like it was my fault since you thought to do so because of my comments. I should restate that coming off of PPIs should be a GRADUAL process. I'm currently taking 10mg 1x/day and I'm staying at that for 1 month per my GI's recommendation. Before 10mg I was taking 20mg 1x/day for a month. And when I reduce even farther I'm going to be taking 10mg every other day for about a month. So it's is a very gradual process to let the stomach adjust. I DO NOT RECOMMEND just coming off the drugs quickly. So don't lose too much heart that it didn't help. Perhaps you didn't do it slow enough.

That said, coming off PPIs is not for everyone and is not going to benefit everyone. As we all know, everyone's experience with GP is very unique and you should discuss all of this with your doctor.

But I am truly sorry you had a bad experience with coming off the PPIs. I hope you're feeling a little better now.

Take care.

Sam

Report post

Mags,

I'm so happy to see a post from you. I've missed hearing from you. You are always so positive and caring. I always smile when I see that you have posted something, but I hate to see in your post that you have had a hard time.

Hopefully your knee has improved even more. Has the knee replacement already helped some with the trouble and discomfert you were having? I hope you are able to get up and about soon and won't have to worry about your knee so much. You determination to keep going is inspiring. I love how you have keep traveling despite your troubles. I know how much you enjoy it. Hopefully once you have recovered from your recent surgery traveling will be a little easier for you.

I remember how much trouble you have because of your reflux. I'm sure being off of your meds. wasn't easy. Have things gotten a little better now that you are back on them?

I hope you are healing and enjoying the Christmas season. I look forward to hearing more from you soon.
Charity

Report post

I haven't been sick in a while so I may be way off, but when I had my hiatal hernia I noticed that eating a small amount of vanilla yogert would help. I mean like a teaspoon every couple of hours. For some reason it helped the pain. It didn't help the problem as I still had to have surgery, but it stopped the pain for that moment. I had a carton everywhere. It had to be vanilla though--chocolate makes it worse.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support AGMD

Help the Association of Gastrointestinal Motility Disorders reach its goals and support people like yourself by making a donation today.

Donate to the Association of Gastrointestinal Motility Disorders

Advertisement

Advertisement

Discussion topics

Helpful links from AGMD

Community leaders