My Log for Coming off PPI's

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Background Information:

In my 20's. History of GERD. Reflux on and off. Usually caused when I went OTT with poor eating + smoking twice a day. Had a bad GERD flare-up in mid 2016 and it didn't go so was on PPI for 20 weeks before my endoscopy. 

Was wrongly diagnosed with a mid sized hiatus hernia in 2016. Had been on 40mg Esomeprazole from May 2016 to February 2018. 

February 14th to March 18th - I took 20mg Esomeprazole instead of 40mg. 

I supplemented this with DGL (2 per meal, 3 times a day) and Slippery Elm Capsules (same routine). Both proved to be awesome, DGL in particular. I reduced my dose of these supplements from March 13th.

February 28th - I think a form of rebound reflux must have kicked in. I went back to taking DGL and Slippery Elm, whilst also being on 20mg and things got better. 

March 18th - I came off PPI completely 10 days before my endoscopy, had Gaviscon Advance as instructed, DGL and Slippery Elm. 

In the 5 days leading to my endoscopy I stopped taking antihistamine (which controls my reflux). 

March 30th - I haven't had any rebound reflux yet. I'm hoping I don't. I have only been eating soft foods because of pain post-endoscopy but I am going to eat more solid foods in the next couple of days. I stopped taking gaviscon advance yesterday. 

I have also managed to reduce my dose of DGL, from 6 a day to 3 a day. 

If the reflux hits me aggressively, I will have DGL, Slippery Elm and Gaviscon Advance. 

If I'm getting no relief after that, I will get on an H2 blocker, relatively low dose and then try to quit again in a month (I heard the rebound is a lot lower). If I'm still not faring well even if I up the dose of H2 blocker, I will live on 15mg Lanzoprazole capsules until I try again. 

The problem is, I want to get my stomach acid level checked, as I want to have Apple Cider Vinegar or even Betain HCL when I'm completely off PPI's. 

I would be interested in something like a stretta or linx procedure, as I do not really want to have to live with GERD problems often as I don't want it to progress to Barrett's some time in the future. 

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  • Posted

    I’m in the same boat as you mate. Guy in his thirties who has esophagusitus grade A and GERD. Been on PPI for 3 years and weaned off with a combination of DGL and slippery elm before meals and Gaviscon Advance afterwards. I’m not convinced it’s enough but struggling to take PPI again as the side effects seem worse than I remember. Same as ranitadaine. Interested in stretta and Linx also, have you been offered it on nhs ?
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    • Posted

      It's annoying living with this at this relatively young age, isn't it.

      Ultimately, for GERD they just prescribe a PPI for a number of weeks, up to 16. That is the 'official' way of managing GERD medically, so who says we need to really be taking it for longer? If our bodies can adjust to life without it and regain stomach acid that has been suppressed, so we're not over-producing because of a lack of stomach acid, then so be it. 

      Have you had an endoscopy done more recently?

      The problem is, I always wake up with a slight taste of reflux - when I'm asleep, I don't have any reflux. But 20 seconds into me 'waking up', the acid rises in my esophagus even when I was on PPI. It just doesn't have a stinging effect. What do I do about a phenomenon like that I wonder? 

      At 40mg, I still had symptoms although I had no damage etc. Now I am not on a PPI and I am having the same level of symptoms (which is a big success) but I don't have the 'protection' that comes with taking the PPI. 

      So it's a bit of a confusing one. 

      So are you back on PPI? I haven't really looked much into stretta and linx. I don't know if I would qualify but I would certainly have it done if it has shown to be even relatively effective (for me, it's worth doing even if it reduces reflux by something like 40%). I dont know how long they work for. 

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  • Posted

    Hi curiousmind can I ask you a question please you have mentioned your on esomeprazole. My dr as started me on these today 40mg morning and 40mg at night. I’ve been on lanzparzole for 18 but not working now are these ones good, I’m having a really bad flare up but I hate taking new meds x
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    • Posted

      'I’ve been on lanzparzole for 18 but not working now are these ones good,' - 18 days or 18 months? 

      What dose was your Lanzoprazole? 

      80mg is extremely high, 40mg is seen as relatively high itself. I would personally get a second opinion. Putting people on 80mg because of GERD doesn't really seem right. 

      This tells you the standard doses people take for all of the different potential problems: 

      https://bnf.nice.org.uk/drug/esomeprazole.html

      I would advise against having anything like onion, lemon, vinegar, very rough textured meat, spicy foods, greasy foods. I would get reflux having these foods, it wouldn't matter that I'd be having 40mg. 

      For me, I also used to get reflux when I kept the radiator on at night, for some reason it cooked my oesophagus. 

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    • Posted

      Hi thanks for replying I’m only taking one 40mg per day not going with the two. I was on lanparozole for 18 years but I’m thinking of sticking to it. It’s what I know x
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  • Posted

    Karen,

     80mg a day is rather high. I’ve been on esomeprazole, it’s pretty much the same as the rest especially omeprazole. They all do the same job, just some give worse side effects than others.

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    • Posted

      Thanks for replying Stuart yes the phymisty lady said that. I’ve never took them before I was thinking of just doing 40mg on a morning instead. Dr said he wanted to get it back under control as soon as possible so he was going for 40mg night and 40mg morning. I don’t do side effects makes me feel worse especially cause I suffer with health anxiety to x
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  • Posted

    So, it's been 16 days. I had a Nando's 1/2 chicken (no spicy sauce obviously) and had only a smaller, manageable level of reflux. I had 2 DGL capsules prior to Nando's. 

    I haven't had any DGL or Slippery Elm and I've been ok, just a slight burning sensation in the throat as the food passes down but nothing beyond that. 

    More updates soon. 

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  • Posted

    Mini-update. I'm taking DGL chewable tablets here and there but they are not good for my teeth/gums, so I brush my teeth/use mouthwash afterwards. 

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  • Posted

    Update: Despite being told I have no damage etc. I'm still waiting for my biopsy results which should arrive with my GP surely, this week. 

    I have been able to eat all kinds of stuff i.e chocolate, crisps, popcorn etc. without any notable problems. 

    The only problem I've been having is when I rest in bed for a short while (not sleeping), I tend to feel a little reflux (which doesn't create the severe sensation in the chest, but rather a light burning sensation in the oesophagus). It usually clears up on its own, but I take 1.5 DGL tablets before the next meal after this sensation starts. 

    Otherwise, things are going well. I am still treating myself as somewhat vulnerable, I'm not risking onion or greasy kebabs etc. Nor have I returned to a bodybuilding diet where I eat a lot of protein, but will increase my protein intake from 50g to 75g every day and see how that goes for the next 2-3 weeks. 

    If you've been on PPI's for a lot longer than I have, you should definitely consider coming off PPI's slower than I did. 

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    • Posted

      I'll also add that cranberry juice is better for my reflux than water, in the evenings. However, 'Cranberry Light' which has less or no sugar tastes horrible and smells bad but the normal ocean spray cranberry juice has a lot of sugar. I'm committing to cranberry juice for a little longer - I'd like to switch to an alternative, though. 

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  • Posted

    Update: My acid reflux has been rising again after about 2 months of being fairly acid free. I'm having to watch what I eat to prevent reflux again. 

    My dad made salads for a week. Only at the end of the week, by instinct I asked if my dad put in Apple Cider Vinegar. It turns out he put in ACV AND lemon. This what led to my slight demise. 

    I'm very disappointed but I did want to trial ACV and still hope in doing so in the future. So now my diet is:

    Bran flakes with almond milk x 2 (morning and night)

    2x bland chicken with cucumber and tomato salad. 

    I need to think of a non-reflux food with carbs in it, bread gives me a bit of problem. 

    I have to be a little more active, no resting in the bed (which causes me reflux). A return to exercise is required. 

    I'm controlling my reflux with DGL but only have one 20 minutes before main meals and one before bed rather than 2-3. 

    I may include slippery elm capsules again. I have been eating some bad foods so I have to keep them removed, even small amounts of the wrong foods can bring me back to reflux territory again. 

    I feel a bit vulnerable because I'm not on PPI's, yet feel 'free' to not be on PPI's. I will treat my body with extra care and be rigorous. 

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    • Posted

      I would add, if you notice your stomach (not oesophagus) feels like it's burning a bit more, you should eat but only eat a small amount, and eat something completely non-acidic. Eating a BIG meal during these moments will actually trigger reflux. 

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  • Posted

    Nothing is a quick-fix for my acid reflux quite like chicken wings. Yup, chicken wings, something about it lubricates the oesophagus and I don't get problems afterwards. 

    Important not to be too sedentary until the reflux decreases. Keep away from onions as usual. 

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