Coming off PPIs: I've taken PPIs for 20 years... - IBS Network

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Coming off PPIs

Orchard33 profile image
19 Replies

I've taken PPIs for 20 years, almost completely unmonitored, firstly and worryingly Ranitidine for 15 and Omeprazol for 5. I took them for reflux which has always been part of the IBS I've had since my 20s.I now want to stop taking Omeprazol as I feel it' s now a physical addiction and ineffective. I spoken to my GP who is supportive and a pharmacist who was very helpful.

Any useful advice from people who've done it would be appreciated.

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Orchard33 profile image
Orchard33
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19 Replies
meadfoot profile image
meadfoot

I was changed from PPIs to ranitidine so only had minimal reaction to changing the med reflux wise but suffered badly when stopping to ranitidine. My suggestion would be to do it slowly and gradually reduce your doses. Nothing drastic just slowly slowly or you may find the acid rebound is hard and harsh. I found gaviscon advance helped.

Good luck with it, getting off meds isnt always easy but if you feel you need to do so and your medic agrees slowly slowly will be best. I hate this reflux business so debilitating.

Orchard33 profile image
Orchard33 in reply to meadfoot

Thank you for your advice. After one missed dose (taking Omep every other day at the moment) the rebound has been very marked. Am taking Gaviscon after food, which helps. Will soon start using slippery elm as a long term remedy. Coming off meds after long-term use is a very challenging thing to do.

b1b1b1 profile image
b1b1b1

I know that you do have to taper. Talk to your pharmacist or doctor about the best way to do that.

711debbie profile image
711debbie

This is what worked for me in 2017 when my doctor ordered me off them (I'd been taking PPIs for 3 months for an ulcer: I didn't eat any kind of bread for at least two weeks. I don't know why that worked but I had no rebound at all. What do I use now? I buy Luvos Ultra, which is a German product made from loess. You can order it on this website in English:

luvos.net/products

There is also a website in the US for their products.

Orchard33 profile image
Orchard33 in reply to 711debbie

Thank you for the Luvos referral. Intriguing. Have ordered some. Anything that mitigates the rebound very gratefully received.

Fergie53 profile image
Fergie53 in reply to 711debbie

Thank you, interesting, I’m having a lot of problems with IBS an I think I may have an ulcer, don’t know what’s best!

Orchard33 profile image
Orchard33 in reply to Fergie53

Strongly recommend you see your doc re ulcer possibility.

Fergie53 profile image
Fergie53 in reply to Orchard33

Thank you, my GP already doing tests

LGARGDRG profile image
LGARGDRG

After taking Omeprazole for five years, I found that gradually reducing the amount and frequency, plus taking Gaviscon Advanced just before bedtime prevented acid rebound. I do the usual things like try not to eat too late and this has worked for me. Good luck.

Orchard33 profile image
Orchard33 in reply to LGARGDRG

Thank you. Encouraging to know that after 5 years you had success.

Andann profile image
Andann

Yes, me too for similar time period .... worrying once you find out about warnings. On having gastroscopy the specialist said ' your stomach surface is covered in fundic polyps , dont worry they are not pre cancerous' F.....k. ' I asked my GP if they could be causing my stomach problems and she said the stomach is very flexible. Huh. Its probably about 2 yrs or more since I stopped taking them.....gradual cessation, 3/4 a week , then 2 then 1, then none. I changed my diet, cut out most fats, including eggs, ..... onions, garlic, chilli, sugar, alcohol, caffeine, tea, cut quantities down and some other items on the fodmap lists.I have never been able to tolerate avocado, And lost about 5 kg. Gradually my stomach became calmer, not perfect , but heaps better and didnt wake up in the night with pain or reflux. Occasionally got trapped wind on left side but that has gone. I can tolerate some alcohol and occasionally try small amounts of previously forbidden items and mostly am ok. I am only talking stomach situation here ... there are other foods my bowels dont like and I'll probably never be able to tolerate those. Fresh ginger tea and peppermint tea were often helpful and peppermints help too when I sometimes feel a bit nauseous.Hopefully you will adjust too, note; ranitidine is a ppi too.

Orchard33 profile image
Orchard33 in reply to Andann

What a troubling journey you've been on. And how you've stayed with it and prevailed. Brilliant. I'm at the beginning, having made the choice, come what may, to come off them. The polyps are particularly disturbing. But I do believe that with the right support, my body will heal, even after 20 years. And Ranitidine is the really worrying PPI!!I will shortly be on the list for a gastroscopy after a H pylori hoop has been jumped through. NHS protocols are such a barrier to treatment, let alone waiting lists.

So I take great encouragement from your reply. It can, will and must be done. Thank you so much for sharing your experience.

Edgar77 profile image
Edgar77 in reply to Orchard33

I am on lanzoprazole for acid reflux. Is this a PPI? I take paracetamol + every morning for about 5 years. I awake almost every morning with a head ache and only this will shift it. My doctor said its OK as long as I take the lansoprazole? I have tried to give it up. After a bad flair up that lasted a year and ilost 2 and a half stone I was taking the maximum 8 a day. Got down to 1 but back to 2 a day sometimes more.

Orchard33 profile image
Orchard33 in reply to Edgar77

Yes, it is a PPI. I'm not medically qualified but paracetemol as far as I know does not upset the stomach whereas aspirin-based drugs would. So not sure about what the doc saying.My own preference now is to use more natural remedies that will support my digestive process as I give up PPIs. Doing that is a personal choice and fortunately my GP is prepared to support me in that.

Edgar77 profile image
Edgar77 in reply to Orchard33

Thank you for your reply. That's made things a bit clearer.

Foxycat profile image
Foxycat

Ranitidine is NOT a PPI it's an H2 Receptor Antagonist

H2 blockers are a group of medicines that reduce the amount of acid produced by the cells in the lining of the stomach. They are also called 'histamine H2-receptor antagonists' but are commonly called H2 blockers. They include cimetidine, famotidine, nizatidine and ranitidine.

Proton pump inhibitors (PPIs) reduce acid secretion They include Omeprazole, Esomeprazole, Rabeprazole, Lanzaprole, and Pantoprazole.

I was first put on a PPI (Zoton which is lanzaparole) because of a gastric ulcer. I stopped taking it when it healed. 16 years later I was put on lanzaparole for acid reflux, Things were ok until about 4 years ago when I was prescribed it again. This time I had problems with generic lanzaparole and went on to Rabeprazole. Like others here I am appalled by the side effects. I am now diagnosed with 'silent' reflux but put off gastrosocpy as had a bad trip last time! I now feel I should have one if only to see whwat damage has been done. My GP made me change to esomeprazole and I had MASSIVE rebound sypmotms even though I was still taking a PPI! Switching back again was even worse.

Orchard33 profile image
Orchard33 in reply to Foxycat

Thanks for the correction re H2 blockers. I guess the mechanisms are different but the effect is the same.I think I'll only understand the side effects as I come off them and will record the process.

I'm mostly aware that both types of medicine are very powerful and have equally powerful side effects.

This coming year will be my own longitudinal study on PPI withdrawal. I guess the gastroscopy will be an important moment to see what the damage has been. I've already requested sedation which I had in2004 and knew nothing about it. But sedation is not automatically given in the NHS.

711debbie profile image
711debbie

I can't prove it but between the ulcer and taking PPIs for it, I believe the PPI caused my IBS, and there are studies showing a connection. I was having problems with my stomach already before I started the PPI because I changed my diet from low carb to a gallstones diet on my own, but from the time I started the PPI, I was in severe pain (and fear from not knowing what was going on with my body) that didn't abate until I went off the PPI, but I realized even before I stopped the PPI that I probably had IBS. My GI doctor's tests just confirmed that and I've had it ever since (along with a DAO insufficiency that further restricts which I can safely eat).

The biggest problem was that my GP didn't tell me how long to be on the PPI for the ulcer; again, a lot of studies show two weeks is sufficient, and I was on it for 3 months despite being in a lot of pain.

Orchard33 profile image
Orchard33 in reply to 711debbie

I agree with the connection between PPIs and IBS. I'm monitoring my gut now I've very recently stopped taking them but already it feels better. And my digestive system has started gurgling again!!

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