Should I come of PPI's, if so.. How?

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Hi, I have had Acid Reflux/Gastris (not sure which one, or could be both) for around 2 years now.

I have been on and off PPI's for arond a year and I'm really hoping to come off these drugs ASAP as I have heard nothing but bad reviews on them.

Question 1: Am I ready to come of them?

I haven't had an ounce of heartburn, and I mean not even once, for the past 8 months. The only problem I seem to have, is that I get stomach cramps most days in my upper abdominal area. It's like a dull ache I feel is realived by putting preasure on it or eating something. It also is realived by having DGL licorice.

So what is the stomach pain I am getting, does that mean I am not ready to come off the PPI's yet?

Question 2:

I am hoping to come off them, even if I am not ready too, providing that I get don't advised it is a bad idea on here. So if I was to come off them, what would be the best approach to this? I am thinking of maybe lowering my dosage from 30mg to 15mg for a further 2 weeks, then hopfully lowering it again even smaller after that (if they have smaller dosages - Lansoprazole). I have also heard that taking a H2 block at night may help too once I come off them.

Every time I have tried to stop coming off my PPI's in the past, I have had a rebound and ran back to the PPI's thinking that my problem has came back, but only recently I realised you can have a Rebound when you come of them,  so I feel stupid for running back to them. That is why this time, I wan't to do it correcly.

PS, I am in my mid 20s, currently taking 30mg Lansoprazole. I am taking DGL licorice,  Acidophilus tablets, slippery elm and a very bald diet.

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  • Posted

    Hi,

    The longer you are on PPI the longer the PPI taper needs to be. I was on PPI for 3 months so my doc said to take PPI every other day and in between take maximum strength h2 for one month. Then the next month take the H2 block everyday for one month. Now currently I am taking the H2 block every other day. As you can see my taper is 3 months long for 3 month course of PPI. I am going back at the end of next month for a repeat endoscopy to see if my ulcers/reflux has healed. I never get heart burn like you mine is more of the silent kind but my doc said my ulcers is causing it once they heal the reflux will go too. Goodluck.

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  • Posted

    Why come off them if they are doing the job. The problem is people rarely post and say they are wonderful, you only hear from the moaners.

    I have been on them for about 10 years now and have absolutely no plans to stop. Why? because I think that there are far more things in life to worry about. The most dangerous thing I do is drive my car, that kills thousands of people a year, do PPI kill thousands, no.

    I don't smoke because that is serously bad for you and I hope you don't drink a lot, if you do, then time to give that up before the PPI. Now lets look at diet, how many things do you eat that are not recommended, are you giving them up before the PPI.

    Hopefully you get my drift. The reason I have to stay on the PPI is that my body generates too much acid, stopping the medication means the problems return.  Can you control your reflux by diet or other means, I can't.

    Life is full of risks, time to balance the PPI with everything else you do

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  • Posted

    I believe it is bad advice for someone to tell you to stay on them for an indefinate time, everyone knows these are not meant for long term.  I was on them for 1 year I took Prilosec, I decided I better try getting off them so what I did was take a pill every other day for about 1 week then a pill every 3 days for another 2 weeks then I stretched it out to 5 days, I had a rebound effect I don't think there is any way to avoid it, you just gotta get through it, It took at least a month to start feeling better with out the pills.  I am glad I got off them.
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  • Posted

    The people you are asking may not be medically qualified?? What works for them may not be the same for you. There's a test your doctor can provide which involves monitoring the amounts of acid you have over a 24 hour period. It involves a tube in your stomach for a day which probably isn't pleasant but at least you would know the amount and consultation with your doctor should allow you to make a decision to stay on the lanzoperazole/omeprazole or not. Good luck and best wishes.
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  • Posted

    PPIs are amongst the safest drugs around.

    They are used by millions worldwide and have been for more than 20 years.

    They just might actually save your life"

    Acid + Bile + Reflux can cause the development of Barrett's Oesophagus which can lead to cancer.

    There are no drugs to stop bile nor reflux but we can reduce acid with PPIs.

    I was on them for 15 years, building to 80mg omeprazole for the last few, before I had a fundoplication to reduce reflux, (PPIs don;t stop reflux.)

    The drugs have abad name becasue they have not been used properly. In USA they have been available over the counter for many years. Although the drugs have instruction inserts, research has shown that most patients do not read them. Many thought they were jus a better version of the antacids they were used to and took them when they felt they needed them and if they weren't working, they took more. A recent paper showed that amongst the self medicators, abuse was prevalent.

    They are powerful drugs whose usage should be monitored by a doctor. They should be taken at the minimum effective dose for only as long as they are needed.

    The "side effects" reported are actually from the drugs doing their job well. They are supposed to reduce acid. If taken in too high a dose for too long, they induce hypochlorhydria (insufficient acid). Low acid results in malabsorption of essential minerals - including calcium (so development of osteoporosis may be exacerbated), iron (so the patient may be come anaemic, magnesium (which can lead to all sorts of problems)... In addition harmful bacteria may not be easily combatted so the patient may be more prone to infection including C difficile.

    It was because of mal-use by self medicators that the FDA had to issue hetlth warnings about the drug. That started the scare stories.

    But they are probably doing far more good than harm and if you're worried about the "side effects", talk to your doctor about having supplemental minerals prescribed.

    If you really are determined to come off them, try substituting H2 blocker like ranitidine. Long term use of PPIs means the stomach may try to overcompensate attempting to make more proton pumps to produce more acid. Stopping the inhibitors is like opening the flood gates and you my experience the "rebound effect" of over production of acid.

    The other way to come of them is to have a reflux reduction operation (ie fundoplication) which can leave you med free (like me).

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  • Posted

    I totally agree with WKnight. Two questions, why are you having too much acid. Is there something you can do to prevent it without taking the PPI's? Do you have a hernia or other gastric problems causing it? Second - If you can't stop or reduce the acid from coming up the esophagus, worse things can happen (worse that what you are hearing about continuing to take PPI's -- like Barrett's Esophagus or Cancer.) Please talk with your doctor before changing medications. I do hope you are seeing a gastroenterologist and not just a regular doctor for this treatment.
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    • Posted

      Another one to put on your list is SIBO. This was a top subject at this years gastro confebrence and just so misunderstood yet the testing gets easier and. More accurate every month.
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  • Posted

    Hi everyone,

    I have a lot of replies here, so I would like to say a huge favour for your time, I really do appreciate it.

    Ok, many are asking why I am want to come off the tablets.

    1. I am get a lot of headaches being on the tablets including constant jaw ache resulting in my jaw snapping shut at night, I have to wear a night guard because of this.

    2. Since being on these tablets I have suffered with a bad back and again, worried it could be the tablets? I know it could sound like I am blaming the tablets for everything, but I will just never know where the problem is coming from until I try to come off them.

    PS. I have tried different PPI tablets to prevent the problems, and nothing changed.

    One thing no one seemed to have answered, but that with my only symptom I seem to get now, is upper abdominal pain/ache, I don't get heartburn anymore, not the slightest.. yet before I went on the tablets I used to get heartburn every night without failure.

    I had an endoscopy done around 6 months ago and everything shown ok apart from that I was inflamed with some stomach erosion. Since then I have been back on my PPI's and no problems since.

    My idea is to hopefully come of the PPI's and control it with DGL Liquorice, Slippery Elm & a VERY, VERY bald diet. Therefore if I can keep things at bay that way, it would mean no side effects, and I happy stomach.

    I know I am not talking to medially trained members here, but from what I am telling you, you may be able to give me some self experience from yourself and let me know if it sounds like I am in a stable position to come of the tablets. 

    What do you think?

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    • Posted

      Slippery Elm and DGL are demulcents forming a soothing layer over any inflammation and possible increasing mucous production. There is no clinical evidence that they do anything to combat acid or reflux.

      Sliipery Elm contains oxalates which for some people can damage liver and kidneys.

      Whilst liquorice contains beneficial phytochemicals, it also contains glycyrrhizic acid with known side effects which is why deglycyrrhizinated liquorice (DGL) should always be used but it is not known what health risks there may be with this product.

      These "natural" substances may cause additional relief and may be used complementary to your medications that have been rigorously tested. They should not be used instead of PPIs.

      Headaches have been more frequently reported as a possible side effect of esomeprazole (Nexium) and dexlansoprazole (Dexilant) rather than "standard" earlier PPIs. Pantoprazole (Protium / Protonix) seems to be the one with least reported side effects.

      Your report above does show your PPIs are working for you. Given the risks of not taking them, it seems the best advice would be to remain on them. If you're dead set against them, you could try Histamine H2 Receptor Antagonists (eg Ranitidine) instead. Discuss with your doctor and try 300mg as a daily dose initially for a few weeks.

      As to diet. Once you have identified your triggers to avoid that should help. There's no need to go on a bland diet. There are myths and misconceptions regarding things like spicy foods - which actually can be healthier than some blander foods because of the healing qualities of the spices. The myth is perpetuated because we feel a "burn" in the throat and imagine it will burn our stomach and oesophagus. If you have inflammation, however, you may feel it in the same way as pouring lemon juice on a skin abrasion would burn.

      The charity I chair, for those of us with acid reflux problems and Barrett's, actually has a regular curry evening instigated by our top GI consultant.

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    • Posted

      Hi,

      Thanks very much for your replies, I really appreciate it.

      You seem like you know what you talking about, and since you said that I seem to be doing well on my PPI's, would you know what the upper abdominal ache could be? It appears to be eased off after eating food or DGL Liquorice.

      Also, you are advising me to stay on PPI's, but how will I ever know when to come off them, as I have been doing great for 8 months, it's just the abdominal pains. For all I know I could of been ready a few months back, therefore I am taking a drug that could be doing more harm.

      Btw, I have regular appointments with my doctor, and another one coming up in 2 weeks. I am not asking on this forum as a replacement of medical advice, it's just.. to be fair, the doctors I go to seem to only go by the textbook. One told me ice cream, milk and milkshakes are good for acid reflux? Surly not!!? Dairy for .1, and fat for .2.

      Thanks for reading anyway, I look forward to hearing from you : ).

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    • Posted

      Don't know the cause of your abdominal pain. Your doc should be of more help since she/he should have more medical history and test results etc but if you have found a method of controlling it, that's good.

      Again, with PPIs, discuss with your doc how long to stay on them. if you find reducing them has caused no problems, it may be possible. (Some people have to stay on them for life.)

      And I concur that dairy products aren't good. As you correctly identify they contain animal fats. And if you mix milk with acid you make plastic (casein). But, again, we are all different and tolearte foods differently. You may find you tolerate them OK.

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    • Posted

      You could try going down the naturapath path. Nothing to lose but find out how the other half live. My wife swears by them (not a reflux problem but oddly a serious problem not covered here anywhere. Hard decisions!
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  • Posted

    Thanks all for your replies.

    So what would be the best way to decrease my dosge to come off them?

    I'm currently taking 30mg Lanzopole a day. I am thinking of dropping that to 15mg this friday and taking that for 2 weeks. After that I may take the 15mg every other day.

    My final step would be to come of the PPI's fully and take a h2 blocker for a while until I feel I can stop that too.

    Of course I will be using all my herbal supplements to help me along the way.

    What do you think? I will be having a word with my doctor, but you know what they are like, they don't want to know you when you tell them you want to go "Natural". I last time got the response, "well I don't know what your doing here then"!!! A bit of supportive advice would have been nice, after all you are my doctor.

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    • Posted

      I would stay on the 15mg for one month then take it every other day for another month then every 3 days for 2 weeks then stop. Remember do not rush the tapper because if you stop too quickly the rebound acid will be too much and you will be in again. Then you will back to square one back on the ppi with no improvement. 
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    • Posted

      Thanks very much, yes, maybe I am rushing it because I just can't wait to see if I can cope without. I will defenilty up to 2 weeks to a month with my 15mg.

      When I start having 15mg every 3 days, will I be able to start a h2 blocker at the same time, then carry on taking the h2 blocker for while after I stop my PPI's fully too?

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    • Posted

      Thanks very much, yes, maybe I am rushing it because I just can't wait to see if I can cope without. I will definitely up the 2 weeks to a month with my 15mg.

      When I start having 15mg every 3 days, will I be able to start a h2 blocker at the same time, then carry on taking the h2 blocker for while after I stop my PPI's fully too?

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    • Posted

      So here is my how my gastrodoc did my tapper. While you are taking the ppi every other day for a month you take the h2 the days you do not take the ppi. That way it signals to the body you are coming off the ppi. Then you stop the ppi and take the h2 for a month then the h2 every other month then stop outright. You should discuss with you doctor but as you stated he/she seems useless i would switch docs asap. Im glad my doc is very patient and understand and he even wants me to heal naturally not cause of a pill.
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    • Posted

      Then you stop the ppi and take the h2 for a month then the h2 every other day* then stop outright. Sorry fixed smile
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    • Posted

      Hi, I am very sorry for the late reply, I have been very busy over the past few days, please see bellow post.
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