Long-term use of PPIs for acid reflux - Scleroderma & Ray...

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Long-term use of PPIs for acid reflux

Duck33 profile image

Hello everyone,

Just wondering if anyone has experience of taking PPIs for a long time... I've been using them off and on now, for a couple of years to manage acid reflux, and trying to fill pill breaks with a strict diet and gaviscon advance. But the reflux is getting worse and my GP wants me to go onto a permanent daily PPI now. I'm in my 40s, so I guess I could potentially could be on them for a while. But I'm a bit worried about this because of all the stuff I've read about possible long-term side effects from taking a permanent PPI...Even the leaflet in the box is scary. I've read about osteoporosis, kidney problems and even stomach cancer. But I know the alternative of not taking them is potential oesophageal cancer from acid in throat. As always with scleroderma, we're stuck between a rock and a hard place. Anyway, just wondering whether anyone who has taken a PPI for a long time can tell me how they're getting on with them. Do you get regular endoscopies to keep an eye on you? Any advice would be much appreciated. Thanks so much.

18 Replies

I have been on PPI for many years but like you I worry about long term use. I get no check specifically for this but having turned 60 now and with osteoporosis in my family I plan to discuss this at next yearly check up, that is if it happens.

LadyTrundle profile image
LadyTrundle in reply to Fishie1

I've been on Omeprazole for about 20-25 years years (??) so since my early-late 40s. It's all a blur as I'd been seeing GI consultants since 1986 for Ulcerative Colitis, and it seemed like a natural progression! However around the late 90s I had an injury that I think caused my hiatus hernia, which led to the oesphagitis and therefore the omeprazole. I'd been seen and having bloods done by the GI teams at least annually since 1986! I was originally on 20 mg daily, but my issue with it was that I wasn't told how to take it properly, just 'in the evening'. As the heartburn was worst at night I just lobbed the capsule in along with a Gaviscon tablet just before going to bed for the first few years, and got no benefit - but which time I'd been upped to 40mg. Then a Dr friend of mine was staying over and saw me do it and screamed! Turns out PPIs work almost in opposition to Gaviscon-type, so you shouldn't take them anything near each other. So I started taking the Omeprazole 20 mins before my evening meal, and a Gaviscon tablet or liquid at bed time if needed.

About a year or so later, I started having sessions of violent projectile vomiting, sometimes with the other end exploding at the same time, and bloating and gas!. Dreadful. I slowly worked out it was when I was eating meat (unless very minced up) or fatty things or chunky fish. It seemed like my stomach had lost the ability to digest these things. I figured that if PPIs lower stomach acid, then maybe it had got too low ... The GI consultants denied this could happen, but it made sense to what I was experiencing, so I put myself on a course of digestive enzymes from Holland and Barrett for several months. It worked (and low and behold, a few months later the papers were reporting the prolonged PPI reduces stomach acid too much).

I asked about coming off Omeprazole, but with endoscopies every 3 years showing some scarring, and continued heartburn and reflux, I was advised to stay on - 20mg. This has now gone up to 40mg, like you because what it may be preventing is worse than its side effects.

But they've just recently done a barium swallow test as I reported increased difficulty swallowing, and it showed dismotility in my throat ... so I don't know it that's because of or despite the omeprazole.

I do know that when I think of chucking out all my many medicines sometimes, the omeprazole is the one I would keep, as the reflux and heartburn are the things that very evidently make my life worse!

In general though, if used correctly I tend to think it helps rather than harms.

Duck33 profile image
Duck33 in reply to LadyTrundle

Thanks so much for your help. I really appreciate it. I did read about the too low acid in the stomach issue relating to PPIs. It’s such a difficult balancing act, isn’t it. The digestive enzymes sound interesting. I’ll definitely look into them. I’ve been taking Yakult for a while, but the enzymes sound more useful. Meanwhile I hope your doctors can help you with the swallowing issues. They sound so challenging. Take care and thanks again for sharing your experiences. I’m so grateful.

Hi LadyTrundle, it was good to read your reply as I’m off to see my specialist nurse this afternoon and I was going to ask about what the PPI’s effect is now after 10 years on my intestines! It is very remiss of your Pharmacy to not write on your tablet box that you must not take antacid with PPI. Mine always do, so inconsistent, depending on area perhaps? I also find Acidophilus from H&B has helped my gut tremendously, I’ll mention this in case she’d want to pass on the information to her other patients, do you know to take with meals and not with hot drinks? I was also told to never lie down on my right side and if I do fall asleep & turn to my right I get instant reflux! P.S. Duck 33. Hope you’re ok with me butting in on your post. X

Duck33 profile image
Duck33 in reply to Dodder2012

Hi Dodder2012, thanks so much for joining in. I’m really glad you did. I think it’s so good to talk about everyone’s experiences. I wish there was more discussion about PPIs and how people manage the pros and cons. All your tips are really useful. Thanks again and all the best. X

Hi Dodder2012, Yes, I also take Acidophilus from H&B - and also, having been a Zoe App Covid contributor and become interested in the wider Zoe messages about gut health and microbiomes, I also have regular live yoghurt, kombucha (I make my own, much cheaper) and sauerkraut when I can find a flavour I can stand!. And yes, not to have with hot things. A pharmacist eventually advised me to take the PPI 20 mins before food, so it can get to work in peace. As for lying on the left - it's exactly the opposite for me! If I lie on my left side I gurgle, burp and get reflux while on the right I'm fine. I assume it's because I have a hiatus hernia that the reflux is mostly blamed on!

Duck33 profile image
Duck33 in reply to Fishie1

Thanks so much for your reply. Much appreciated.

I have been taking them for over 15 years and havent had any problems, but i did discuss my worries with my consultant who said the benefits far outweigh the negatives. There came a point when the maximum dose no longer worked for me, and my consultant doubled the dose for a while, but after much discussions amongst different consultants, I had an operation, which improved the reflux for a while and i didnt need them for about 6 months. However, i am now back on the maximum dose. I dont specifically have tests for these, although I do have a blood test every 3 months (It was every month) which check liverr, kidneys etc

Duck33 profile image
Duck33 in reply to pinkcat26

Thanks very much for replying. And really sorry to hear the op didn’t help in the long term. Is it something they can maybe repeat? My consultant says the same thing about the benefits of PPIs outweighing the negatives. I guess we have to choose the lesser of two evils. Hope you get some relief from your reflux soon. Thanks again and all the best.

Hi I’ve been on ppi’s since the 1996 and couldn’t live without them, just take 15 mgs Lansoprazole ( I couldn’t get on with omeprazole ) a day. I had a really bad episode a couple of years ago and had to go up to 60 mgs but came back down as soon as I could. Was on 30 mgs for quite sometime but managed to come back down to 15 mgs with the very odd extra one if it flares. Was on the waiting list for a gastroscopy but of course lock down has put paid to that, but had to have a barium swallow for having problems swallowing, which showed a hiatus hernia. Which is what was suspected all along but it was nice to get it confirmed! Still get the odd flare up of that but not as bad as the first flare when I ended up blue lighted to hospital with a suspected heart attack. But heart was fine thankfully! I did start taking magnesium as I know long term use can make you short and felt a lot better but then things got worse again so have now stopped that think I was a little bit low on the magnesium but just needed a top up. But will ask to get the magnesium tested when (if) things go back to normal with the gp’s! Let’s hope that’s soon.

I have tried coming off the Lansoprazole several times over the years but have never managed more than a couple of days!

I always make sure I’m hydrated ( I use an app to help keep track of my fluid intake) so haven’t had any kidney problems (touch wood) hope this gives you a little bit of info

Duck33 profile image
Duck33 in reply to lupie-Cathy

Hi, thanks so much for replying and sharing your experiences of PPIs. So useful and reassuring. The magnesium thing and water intake are very good point, thanks. I’ll look into those. I think part of my worry is not knowing how bad an impact the reflux is having on my oesophagus. I had an endoscopy two years ago, (I have hernia, too), but the reflux wasn’t so bad then. It definitely feels worse now. I use a lot of Gaviscon when I’m on a break from PPIs. But even when I’m on the PPIs, I’ve always got the same horrible acid taste in my mouth. Wish they had a quick way to check what’s going on inside, without the full gastroscopy. I read about capsule endoscopies, but not sure how widely they are used yet. Definitely not in my area. Anyway, I really appreciate your message. Thanks so much, take care and all the very best.

cowhide profile image
cowhide in reply to Duck33

Another late reply here. I have been on reflux medication since 1996, mainly lansoprazole but mostly not getting good acid suppression, in latter years even in 30 mg twice a day. My GP and pharmacist both advised changing to esomeprazole so I went onto that, I think initially 20 mg twice daily.

My pharmacist made me laugh, he explained ,’ there is ‘reflux medication’ (said in normal voice) ‘and there is REFLUX MEDICATION’ (said in a Brian Blessed voice). 😂 and esomaprazole is the latter.

After another endoscopy 3 years ago the gastro consultant upped this to 40mg x2 as I had bad oesophagitis and a hiatus hernia and I have been reviewed a couple of times and told to stay on that dose. As long as I am sensible re: acidic foods /drinks I am generally acid free, thank goodness. Still get reflux, due to scleroderma oesophagus, just not acidic. If I miss even a single tablet though, it returns.

I did have a funny heart rhythm episode a couple of years ago so my magnesium levels were checked but they were fine. Fortunately there is also no history of osteoporosis in my family so we seem to be blessed with strong bones so hopefully I will not have issues there either as that is another risk factor of long term PPI use.

At my next gastro clinic I am going to ask if there is anything we need to check on or monitor if I am going to remain on high dose a

PPI for life as it looks as though that is what I need.

Duck33 profile image
Duck33 in reply to cowhide

Thanks so much for your reply and sharing your experience. Really useful to read. Part of my problem is that I don’t feel my rheumatologist is very knowledgable about scleroderma and although I think they are aware of the gastro problems it causes, isn’t keen to refer me to gastro. Just keeps talking about waiting lists, but not adding me to the list. I’ve had an endoscopy before, but it was a few years ago when the reflux wasn’t so bad, and it was a GP referral. I think I’ll probably ask my GP to refer me to gastro again. Wish I could move house to an area where it sounds like it is more joined up. I’m in wales, and we’re not allowed to be referred to consultants across the border, where there seems to be more experienced scleroderma rheumatologists, who work with gastroenterologists and other departments to deal with all the problems of this condition. Sometimes it feels such a battle to work it all out yourself. But thanks for sharing so much information, including your second post about motility and aperistalsis. It’s really helpful. I’m very grateful. All the best.

Sorry to come in on this chat a bit late but I too have been on Omeprazole for well over 20 years. One of the first things I had after being diagnosed was a motility /barium swallow which showed that the valve at the bottom of my oesophagus was stiffening so not working properly - (not a hiatus hernia) - which allows reflux, together with motility and swallowing issues caused by thickening of the walls of the oesophagus. Lansoprazole did not work for me. I take 20mg daily in the morning with my breakfast and take a Gaviscon dual action tablet before I go to bed. I too understand not to lie on my right side, lying on your left side helps to empty the stomach. Acidophilus also helps, hadn't picked up on shortage of magnesium. Being well into retirement, we are able to take advantage of having our main meal at lunchtime, and a light tea about 5.30-6pm, anything later and I know I will be sitting up half the night. My consultant also thinks that the benefits of PPIs outweigh the negatives and that they should be taken regularly to avoid flare ups.Very best wishes and hope you get some relief.

Duck33 profile image
Duck33 in reply to SBQ1971

Hi, thanks for replying. Not late at all. Just great that you're sharing your experiences. Thank you. One of the hard things about this illness is that there are so few people who have even heard of it, it's tough to find anyone to talk to about it. That's very interesting about the valves at the bottom of your oesophagus stiffening. I wonder if that might be a problem for a lot of us? That, combined with the thickening of the oesophagus, generally. I'll definitely try to lie on my left side more. And thanks also for the reassurance about long term use of PPIs. I really appreciate it. Take care and all the very best.

cowhide profile image
cowhide in reply to Duck33

The lack of an effective sphincter valve and also the oesophageal scarring/thickening which causes aperistalsis is often referred to as scleroderma oesophagus. It is responsible for reflux when bending over or lying down as there is nothing to stop the stomach contents flowing back up the oesophagus, plus swallowing problems (dysphagia) due to the lack of peristalsis. It can be diagnosed by manometry.

Just a quick update on surveillance for oesophageal problems.. I read something interesting today about a new type of capsule endoscopy that looks like a small pill, with a thread attached. You swallow it with water, then it opens out as a sponge in your stomach and is withdrawn by a doctor after five minutes, and they can then analyse the sponge to see what's happening in your oesophagus. It's called cytosponge and is supposed to cut down on the need for an endoscope. Sounds very promising. They're apparently already widely using it in Scotland, and some places in the rest of the UK. This is the link, if anyone wants to know more. Thanks again to everyone who replied to my first post. I'm really grateful. nhsinform.scot/tests-and-tr...

SBQ1971 profile image
SBQ1971 in reply to Duck33

That sounds really interesting, and much easier to cope with, undergoing an endoscopy is not my favourite pastime!! Hope that gets rolled out more widely. thanks everyone for your contributions.

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