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Any reason for PWME not to take protein pump inhibitors?

Discussion in 'Gastrointestinal and Urinary' started by Sasha, Mar 12, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Just been prescribed a course of these, having had an oesophageal spasm presumably brought on by acid reflux (that I hadn't been aware of).

    Any problems for PWME with them?

    Do they muck up the gut in any way?
     
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  2. eafw

    eafw Senior Member

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    The first time I had these I was fine, they're very effective and had no serious side effects at all. But then had them again about three years ago, had a bad reaction and guts never been right since.

    Gastro did say there are "rare" but known complications, so impossible to say if this was ME related or I was just one of the unlucky few.

    Has the Dr said how long they want you to take them for ?
     
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  3. Sasha

    Sasha Fine, thank you

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    Sorry to hear you had lasting problems...

    I've been told to take them for a month.

    How long did you take them?
     
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  4. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Proton pump inhibitors suppress the stomach acid that helps defend against swallowed pathogens, perhaps leaving you more prone to infection.

    You might also not absorb minerals so well, but on s short course that might not matter so much.
     
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  5. eafw

    eafw Senior Member

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    I can't quite remember but it was probably within the first week that I started getting a reaction, assumed it was a temporary issue and continued. Maybe then took the pills another week or so before stopping because I was getting so ill.

    It's hard to know what to do, GERD and related issues can be tricky to treat and GPs do tend to hand out PPIs like sweeties nowadays without necessarily thinking through the specifics of each case.
     
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  6. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Maybe you don't really have reflux.

    What they typically do in these mystery conditions is to just try a PPI for 4-6 weeks. If it works to eliminate the spasms, and if the problem returns when you stop the PPI, then they might want you back on it for life.

    If it doesn't work, then they have to try and investigate what the actual cause is.The tie in here could very likely be mast cells, and also possibly eosinophils. That's if your stomach valve hasn't been damaged by an infection - probably not likely since your problem is infrequent. You might note what food you have before attacks in case it's allergy based - not a skin allergy but an esophageal allergy.
     
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  7. maryb

    maryb iherb code TAK122

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    How did they diagnose an oesophageal spasm @Sasha ? In my experience NHS gastros and GPs, always prescribe PPI's first, but the cause could also be not you're not producing enough acid, the test for this is a bit more complicated and expensive. Have you tried the bicarb soda test?
     
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  8. Sasha

    Sasha Fine, thank you

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    I was told that the month's course is primarily diagnostic and that if it's working, I'll see improvement within a week.

    I've been on a restricted and monotonous diet for several months now so I don't think this is going to be allergic.

    I asked the doc if he thought it could have been caused by an infection and he said not (I don't know why).

    I'm a bit nervous about these PPIs now! I've just ordered a triangular pillow for people with reflux to see if mechanical means will deal with it. I recently pushed back the time of my last meal to about half an hour before bedtime and I wonder if that's what's done it but I can feel some burning right now. I have to lie down a lot during the day and have to eat frequently to avoid going wobbly, so separating eating from lying down is going to be a problem.

    I really don't want to go the pills route - who knows what that will do to my microbiome!
     
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  9. Sasha

    Sasha Fine, thank you

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    By the symptoms (central chest and throat pain), duration <15m; and since then, a little bit of wind being brought up every now and again, and persistent discomfort in the oesophagus. They think I've got acid reflux which triggered the spasm.

    I don't know about the bicarb soda test...
     
  10. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    You take bicarb and if you burp then you had acid in the stomach.

    If your mystery continues for weeks, I'd look into the EoE forum at Inspire. Even if you don't have EoE, the people there have been around the block many times with many things.
     
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  11. Mij

    Mij Senior Member

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    Do you mean proton pump inhibitors? I was prescribed this to treat h.pylori. I only took it for 10 days and it did not seem to mess up my gut.
     
  12. Sasha

    Sasha Fine, thank you

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    How much bicarb do you take and how do you take it?
     
  13. Sasha

    Sasha Fine, thank you

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    Yes, that's what they are.

    Glad you had a good experience!

    Surprised they gave you them for h. pylori - I just read up on this and it sounds as though they give you them and if they fix your problem, it wasn't h. pylori! Unless I've got confused there.
     
  14. Mij

    Mij Senior Member

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    The PPI was rx'd in combination with flagyl and clarithromycin. The stomach acid has to be reduced in order for the other 2 to kill h.pylori. People who have been treated without the PPI did not have success killing h.pylori. It's a real bugger to eradicate.
     
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  15. Sasha

    Sasha Fine, thank you

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    Interesting!
     
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  16. justy

    justy Senior Member

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    I was given these 'for a month' for gastritis and ended up on them for over a year and took 6 monhts to wean off of them. I had no problems with them tho. Now been back on them as I have terrible reflux all the time. I have to take double to dose to control mine. I was worried about susceptibility to pneumonia while I was on them (had that 3 times so far) but I was OK.
     
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  17. mermaid

    mermaid Senior Member

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    If you take PPIs for more than a few weeks then you can get rebound acid when you try to come off them, so you have to do the weaning thing that Justy mentions. I went on PPIs for Gastritis and ended up on them for 4 years, but they weren't doing anything useful for me by then, and someone should have told me about the rebound acid that was happening to me each time I tried to stop (a Dr I mean!).

    I now am about to have another endoscopy some 7 yrs later to see why I still have stomach pain, but Dr thinks I have something known as Non Ulcer Dyspepsia, but it's yet another one of those conditions that mean they can't see anything when they look for evidence (maybe nervous system related).
     
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  18. maryb

    maryb iherb code TAK122

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    @Sasha just take a small teaspoonful in a half glass of warm water. You should burb within a few minutes. I've found the worst thing I can do is eat before bed...

    I stopped eating carbs and meat in the same meal after chicken and rice caused me such bad chest/arm/back pain I went to the nearby walk in centre and had an ECG. I changed my diet following that and been relatively okay since.

    My hubby raised the head of the bed up by about 4/6inches when I was at my worse.
     
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  19. Sasha

    Sasha Fine, thank you

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    Thanks, everyone, for all this info - it's a huge help! Getting lots of ideas here.
     
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  20. daisybell

    daisybell Senior Member

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    I take PPIs occasionally when my reflux raises its head. I don't have any problems when on the tablets, which I usually take for a month or so, and then come off them. In my experience, they definitely help and I don't get any side effects. However, I have found some more effective than others.

    The other thing that does matter is when you take the tablet... It needs to be at least 30 minutes before a meal. Usually the doctor will say to take either in the morning or at night, but they rarely say that you should take it before you start thinking about the meal or cooking it! They work by reducing the amount of acid produced by the cells in your stomach. Once you are thinking about dinner, the acid is in full production so if you take your tablet too close to the meal or indeed after the meal, it cannot be as effective as the acid is already there.
     
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