Oesophageal Patients Association
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Lansoprazole stopped working

Hi, I’ve not posted on anything before but I’m reaching the end of my emotional tether!

I’ll start at the beginning:

In January this year I ate too much and had intense indigestion pain that I’d never had before. The pain came back for a couple of nights in a row then went away.

This happened again the next month and again went away after a couple of days (the pain was only happening at night)

In May I ate a spicy pizza and went to bed an hour later. I woke up with severe chest pain that lasted about four hours! This time it happened every night for five days so I went to the doctor and was put on lansoprazole. This seemed to help although eating certain foods did set me off again and the pain would happen every night for a few days then stop.

After the four weeks of medicine I felt great but wasn’t warned about reflux coming back due to stopping the lansoprazole and two days later had bad acid reflux all day and night for two days.

I went back to the gp (different doctor this time) and was put back on the lansoprazole and am booked it for a scan of my gallbladder. This time however I have been getting intense pain sometimes on the right side of my chest or the centre (it moves which isn’t helpful) and also stabbing pain in the middle of my back. It got so bad two nights ago that I was crying and gulping for air, it felt like my chest was being crushed and burned from the inside! I called 111 out of desperation to see if I could talk to a doctor and the lady sent an ambulance! I felt a bit bad about that but it hurt so much I just wanted anyone to help! When they turned up the did heart tests and checked breathing and temp and all was normal. They said it sounded like severe reflux and were sympathetic as there was nothing they could do. They also gave my gallbladder a prod and said if it was that then I would have felt it and I have no other symptoms such as nausea or diarrhoea. They called a doctor who recommended gaviscon advance and paracetamol alongside the lansoprazole.

I felt fine last night but now it’s 2am and I’m in pain again (nowhere near as bad as last time) My gp doesn’t seem to listen to me and just said I have a sensitive stomach! I don’t know how to convince her that I’m in real distress here and it’s affecting my daily life! Does anyone have any advice on what I can do for the pain or even how to get my gp to listen?! Sorry for the long post but I thought it would be helpful to go into detail!! Thanks

26 Replies
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Hi,

Sympathies your way.

Ask GP for Helicobacter Pylori test (breathe test kit to be sent away by post). If this test result (a week or two) comes negative then pester the GP for GastroIntestinal (GI) clinic referral for further tests such as primarily endoscopy and depending on the severity and duration of the symptoms tests such as 24hr pH test and Oesophaegal Manometry. The referral might tale anywhere between one to six months or more depending upon the NHS hospital waiting times in your particular area.

Now the issue is GP's will try their best to delay the referral by managing our symptoms by variety of means for example advising you to amend your eating, smoking, drinking alcohol and acidic juices, exercise, eating three hours before bed, raising the head level of your bed etc. Most importantly GP will try various PPI medicines (all prezole family) with increasing dosage concemtrations and intake times. Also gaviscon advance will be silver bullet in managing the firefighting in your oesophaegus.

Perhaps your lower oesophaegus spinchter(LES) is lax or you have Hiatus Hernia at the GE junction. And aggravated by pressure on the stomach by doing physical activities such as squatting and wiping floor or other activities.

Accurate and precise diagnosis is required, however this will take time due to the system we have. Meaning it's going to be unfortunate experience for some more months for you to get a diagnosis if not Root Cause treatment.

The classic trap is that when you successfully manage the symptoms such as heartburn by medications such as PPI and/or animated like gaviscon advance, GP's don't require to refer you anymore (budgets!); however the root cause is not treated if the GERD caused by anatomical anomalies such as HH or lax/nonfunctional LES valve. And this has potential to develop into Barrats oesophaegus or High Grade Dysplasia which further develops onto adenocarcinoma of the Oesophagus.

Good luck.

Disclaimer: not a doctor, research your own please. I have written from my personal experience.

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Hot pizza or not food in general is Not to blame for the acid reflux as root cause. It's fallacy to blame the reflux on hot foods. Did you notice that the pizza you are didn't stay in your stomach for next five nights. In such situations gaviscon advance, eno are best immediate soothers, meaning your symptoms past the point PPIs might manage.

Acidic or non-acidic reflux will always be there for root causes which are anatomical anomalies. Difference is hot foods will make it more acidic than normal for you to notice. However the oesophaegus is noticing and getting hammered with the reflux all the time.

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Thanks for your reply, I’m going to call my gp shortly and try and get an appointment as soon as possible. Problem is the first one I saw knew his stuff but is now on holiday and the next one didn’t have a clue and kept googling everything!

I’ve been given a stool test kit for h.pylori but was told I have to be off the meds for two weeks to avoid a false negative, good luck with that at the moment! I’ll see if I can do the breath test first then try the other later if it comes back negative.

Thanks again for your reply,

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If you think the dr which is n holiday is empathetic to you and also experienced then do stick with the same dr.

Since my diagnosis GPs were shocked because they never considered my symptoms to be this bad and later the hospital approach changed after my time in ITU as I almost broke GI teams record, unfortunately this was broken by a post oesophagectomy fatality after my time.

Also if you happen to be travelling to any "hot" country you may be able to get these test far economically carried out so you have the diagnosis handy to push the GP/NHS system. Unless offcourse if you can afford going private for diagnosis thats best as well.

In the meantime you can only manage the symptoms by variety of means. Have a good week ahead.

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I’m going to ask for the knowledgeable doctor again and keep an activities diary as well as the food diary! Unfortunately I can’t afford to go private and am finding it too hot in this country at the moment!

I hope your symptoms have been sorted out though,

Cheers,

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I can empathise as I have had and do get severe bouts of this and mine (yours might not be) are caused by reflux. Its very important to take your Lanzaprozole regularly and at least 30 mins before food as then you get the maximum benefit. If its reflux gaviscon advance will bring some relief but you have to take it 2 hours before or after Lanzaprozole. Spicy foods will not help your cause nor will coffee or tea or big meals or alcohol. All my tests came back negative they now say it's a sensitive stomach etc.

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Hi, thanks for replying! I haven’t been diagnosed with anything yet with is annoying, just given meds to see if it helps! I’ve been taking them every morning for nearly six weeks and they seemed to be working after the first four!

I have also been on the blandest diet for at least three weeks so I can’t tell what’s setting it off anymore. I’m hopefully going to get an appointment to pester my gp some more shortly.

Thanks again,

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There are (at least!) two issues. The first is whether what you are suffering from is indeed reflux. You can always try Gaviscon Advance to see whether that will bring short term relief, and experiment with sleeping more upright so that when you are lying down at night gravity helps to keep things from rising up towards your throat.

The second is whether it is actually acid reflux that is bothering you rather than bile. The hospital can give you tests for this, but Lansoprazole and other PPI medication work by switching off acid. Bile is an alkali. You can get testing strips from a pharmacist which might help, subject to interpretation, but the real issue is to diagnose what the underlying cause is that is creating this pain. It would need different medication to counter the bile.

Gaviscon Advance is an alginate - it works by creating a protective barrier, and should work against either acid or bile, as distinct from PPIs and antacids which only work against acid.

The other thing to bear in mind that if you have been taking a PPI like Lansoprazole and then stop, you will likely get a 'bounce' of reflux for a couple of weeks until the body adjusts itself, an will probably have to rely on Gaviscon Advance in the mean time.

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Thanks for replying, I wish my gp had told me about the potential rebound reflux then I could have tried the gaviscon earlier! They seem reluctant to diagnose anything and are opting for the “see how you get on” approach which is no fun when you’re in pain! I’ll ask about the bile though, thanks for the suggestion!

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I suppose if you are booked in for a scan then it's a waiting game . Similar to myself on those lines I kept a diary of my symptoms . If they say it is a sensitive stomach then look at your diet . On line tips or ask GP for advice - anything to illustrate to them - not you that you are following their advice and it isn't working . I had a persistent cough and their answer was lansoprazole which makes scary reading it you take it long term . After an endurance test of endoscopes , barium meals and a highly unpleasant monitor where tubes are inserted in and out of your nostrils down to your stomach then the final one is kept in 24 hours then the results were really what I knew all along which resulted in surgery for hiatus hernia . Granted surgery is expensive for the NHS but so were all these tests / appointments which gave very similar results .

6 months on = a new person . I started the NHS Paris rehab scheme at the gym where guided exercise has really helped together with healthy eating for life - not a diet has resulted in an effortless 16 kg lighter with little effort .I am a happy 64kg .

Let us know how you get on after your scan . Ask for a follow up appointment as once you are registered with the hospital dept it is easier to get focused advice.

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Due to my problems, I have changed my eating habits, never eat spicy foods, I stopped taking PPI's ( prezole's) as they give me infections. Eat little and often.

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Thanks for the advice! I wish they would test for more than one thing at once, it’s a pain to have to wait for one thing then ages for the next.

I have another appointment with yet another gp tomorrow morning so I’m writing them a list of what I’m eating and types of pain!

Cheers

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Hi my husband suffered all the symptoms you have and more for about 5 years being prescribed every anti acid on the planet! Went to GP after difficulty with food getting stuck rushed in for endoscopy, told he had oesophageal cancer. He passed away last December. Please push (demand) for investigations it seems a case of who shouts loudest and if something is developing early intervention is always a better outcome. Enough said. Wishing you all the best. J

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I’m really sorry to hear about your husband, it does feel like if you don’t pester them then you’re ignored.

I’m definitely going to push for more investigation and not just wait for one test at a time with long waiting gaps in between.

Thank you for your reply and I hope you are well.

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Hi jinx58, I am gutted to know your loss. Such a shame. So sorry.

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please push hard for an answer 2 years ago i went to dr for heartburn likely i got one that listened to me was sent for endoscopy turned out I had cancer was having operation with in 3 weeks i doing fine now still get reflux though if i lay flat please get your self checked asap

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I’m seeing a doctor tomorrow so I’m preparing a list of symptoms and bits, not that the last one I saw bothered looking at it.

Thanks

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I kept going back to my doctor for two years with reflux before I requested an endoscopy to investigate further. I have been diagnosed with Barretts oesphogus and hiatus hernia and wish I had asked for an endoscopy much sooner. Firmly request further investigations and don't accept more medication as it needs to be sorted. Good luck.

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Alien I Live in Melbourne Australia and post nearly 10 years after my Ivor Lewis . I have learnt to stay away from very spicy foods especially late in the day , But at times I may indulge a little and find using a desert spoon of Gaviscon prior to bed has been helpful I also own an electric bed and can angle my feet down and head up during the night this has been extremely satisfactory to me ,and I very rarely suffer the dreaded Reflux that used to plague me in the early days. I read other peoples stories and at times find out more about the Ivor Lewis Cult not all bad either . Good Luck George.

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Thanks for the reply, I’ve been trying to sit up in bed (I’m currently on the sofa downstairs with the cat at 3am!) and gaviscon before bed. Strangely sometimes it works and sometimes it doesn’t, if my gallbladder scan comes back clean I’m going to ask for the camera down the throat!

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The OP hasn't had oesophagectomy. OP please correct if wrong.

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Thought I’d post a quick update. I saw a new gp on Wednesday morning and this one was much more helpful- I don’t know if the notes from the 111 call encouraged him though!

I’ve got a new batch of lansoprazole incase the last one was off, I’ve only had one but already didn’t have the acid taste during the day.

He said to take the h.pylori test even if I’m taking lansoprazole, (I had read that doing the test while on it can give a false negative) if it comes up negative then I can still try it again later when I’m off the meds for two weeks, but if it’s positive then I know I can start treatment. I’m really hoping it’s this so I can get rid of it!

I’m currently sitting downstairs at 3am with the usual pain in the centre of my chest, strangely the spikey side pain disappeared after i tried some stretching.

Thanks for everyones suggestions, I had a lot of information I could talk to the doctor about and feel much more confident about getting to the bottom of this... hopefully soon as I miss sleeping through the night regularly!

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Stay mentally positive and please do come to forum if you feel like talking.

Good luck.

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Well it’s 2am and I feel like I’m being stabbed through my chest again. Sitting up isn’t helping nor is walking around, I can’t find a position to be in that alleviates the pain.

Unfortunately things have been getting worse for me. On Sunday I felt very low one energy and a little sick before ending up with diarrhoea from 6pm until around that time the next day. I was up all night having to head to the toilet every half hour. This might be unrelated to the reflux or whatever I have but the timing sucks.

Does anyone have any suggestions about what to do when the chest pain starts? Heat pads do nothing nor does paracetamol or gaviscon. I’m in so much pain right now that I want to cry... which also doesn’t help!

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So sorry Alan. Hope you feeling better.

I am not a dr so assuming your chest pain is heartburn due to acid reflux and not due to Amy thing else. You and your GP are the best to find correct way out.

Is that GAVISCON Advance syrup you taking? Is that good mouthful you taking or just a small spoon?

If the acid build up is quite significant then sometimes if not all even gaviscon wouldn't help me. In such cases it was best to drink a glass or two of water and try to vomit the acid in first instance. Then use who salts and later gaviscon advance to soothe the oesophaegus area.

I lived like this quite a long time and can o my sympthasise with you. Unfortunately these pains can only be managed by trial and error till the time you get accurate and precise diagnosis and root cause treatment. As I note you are still on a PPI and not referred to GI for investigation. Perhaps your h pylori tests have not been returned yet.

Keep the records of the symptoms for each week this will help you to put objective data in front of the GP

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Hi again, a lot has been going on so I thought I should post incase it helps anyone else.

An hour after my last post on Monday night I called 111 again and asked to speak to a doctor, but she sent an ambulance again. The heart readings came back normal again but the medic suggested I take my dose of lansoprazole then (4am) and two paracetamol.

After they left I managed to fall asleep for just under two hours before waking up with really severe burning across my chest. I called my partner at home and asked him to book me an emergency appointment with the gp (I was house sitting 23 miles away from home in the middle of nowhere) and then I tried to drive home. I would not recommend driving while in that much pain but I had no way else of getting home. I was also crying the whole way!

I think I was lucky that I was still in agony when I saw the gp because she sent me straight to the emergency assessment department at the hospital. I ended up spending from 10:30am to 4:30pm in the hospital where they took blood (eventually, I have a needle phobia) and asked lots of questions. I am now having a gallbladder scan tomorrow morning and am on a list for the camera and biopsy if that comes back negative. Unfortunately while I was at the hospital I had a couple of really bad pain attacks so they gave me dihydrocodeine which helped. I now take lansoprazole twice a day, co-amoxiclav (penicillin) three times a day and the dihydrocodeine whenever the pain gets really bad.

Yesterday (Wednesday) I was very lethargic and had a few more pain attacks and the chest pain has been constantly there since Sunday just different severities. When I woke up this morning I was very surprised to find the chest pain has pretty much gone but I am left with a new one, a sharp pain to the right of my belly button which is making standing and moving very difficult! I suspect it is trapped wind or nerve as I have been sleeping sitting up the past few days and hadn’t eaten anything for two days. I managed a small jelly and a bit of celery yesterday and am on a similar diet today.

I know this is a long ramble but if anyone else has been having these issues it can be hard to get details.

I’ll let you all know how the scan goes tomorrow.

Thanks to everyone who has replied and for letting me vent!

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