Long term use of PPI's.: I have noted... - Oesophageal Patie...

Oesophageal Patients Association
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Long term use of PPI's.

speakman
speakman
25 Replies

I have noted the recent American article on proton pump inhibitors and wonder what the latest opinion is in the UK about their long term use. I am now 8 years post op. and have been taking Lansoprazole throughout, though in reality, I do not have, nor ever have had, any real problem with reflux. I have not spoken with my medics about this - have others and with what response.

Speakman.

25 Replies
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phil

I would speak to your GP but you have probably not had reflux because you have been taking Lansoprazole. The only way to find out is first trying to take a lower dose daily and if that works gradually wean your self off them all together. Unfortunately the majority of us you have had this operation need to be on them for life. I tried to come off them a number of years ago but after about 6 weeks I started taking them again. For me the benefits of taking a daily PPI far out way any long term reported effects.

Phil

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speakman
speakman
in reply to phil

Phil,

Many thanks. Quite coincidentally, I decided yesterday to phone one of the nurses in the Upper G.I. team who looked after me those years ago. Her position was that in Edinburgh, where I had my operation ( and I suspect also in the rest of Scotland at least), the view is that even although it is now 8 years since my oesophagectomy, I should continue to take PPI's. I shall do so.

Kind regards,

Speakman.

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Bunny69

My understanding on the use of ppis is they are supposed to be a short term measure to ease symptoms of acid reflux. As far as I am aware if God shows inflammation or barretts ppis you are asked to go to gp to be prescribed ppi then 6 weeks later to see if oesophagus has improved. If taking ppi I think they should not be being taken in the week or two before God as they can hide other issues such as adenocarcinoma . They do seem to be seen as a long term fix but in my case I was only on them short term until 3rd ogd revealed 65mm tumour at goj. I suffered acid reflux when laying on my right side which disappeared if lying on left side.

Bunny

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timmey25
timmey25
in reply to Bunny69

I have just been put on opeorazole for heartburn nausea my mum has just passed away with ec mum always suffered from heartburn and burping by been prescribed opeorazole will stop ec

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Bunny69
Bunny69
in reply to timmey25

Sorry to hear about your Mum timmey25, the key with any of these problems is don't suffer in silence. If you have reflux seek help and if symptoms persist alert your medical professionals and do all you can to get symptoms sorted. My own belief is long term use of Ppi is not a cure and can indeed mask a much worse issue. Any cancer needs to be found as early as possible to have a chance of curative treatment. Ogd is supposedly the gold standard for finding these things but as with any test it is open to interpretation and also sampling errors. In uk cytosponge test is being rolled out for trials and hopefully it will increase the survival rates for all forms of personages cancers. This test seems to sample parts of stomach and most of oesophagus so would give a greater accuracy of diagnosis and at an earlier stage. Was your Mums ec adenocarcinoma or squamous?

Best wishes.

Bunny

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timmey25
timmey25
in reply to Bunny69

Hi bunny it was adenocarcinoma what would you suggest I do to prevent ec is it hereditary

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timmey25
timmey25
in reply to timmey25

I am in the UK

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Bunny69
Bunny69
in reply to timmey25

Can you access any cytosponge trials where you are? Failing that try raising your concerns with gp . As far as I am aware the believed cause of adenocarcinoma is reflux causing damage to mucosa which can then lead to barretts which is the known pre cursor to adenocarcinoma. The process of progression is open to debate but is thought to go through barretts to low grade then high grade dysplasia then onto adenocarcinoma. I am not wanting to alarm you and your Mums illness would obviously have caused you to worry. My case was dysphagia first of all to food ( chicken first then bread) I was diagnosed with suspected Barretts and sliding hiatus hernia 4 cm in October 17. Barretts confirmed by biopsies and sliding hiatus hernia 5cm in December 17. After 8 months of symptoms and five months being unable to eat I was diagnosed with 65mm adenocarcinoma of goj and hiatus hernia disappeared from diagnosis. My symptoms of dysphagia had been recorded as dyspepsia and not sure if endoscopist was looking for something I wasn't actually suffering from. The biopsies showed no dysplasia in December 2017 which should have meant I went on to three year screening but had c.f. scan in Feb 18 and barium swallow that mentioned hiatus hernia and achalasia. Unfortunately for me it wasn't either, and cancer was not even suspected until 3rd ogd scope could not pass through goj . Most of what I have read says this is not fast growing but symptom onset normally only happens once oesophagus is restricted by 70%.

Where in world are you?

Bunny

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timmey25
timmey25
in reply to Bunny69

I am in the UK I have been to the doctors and he said he has no concerns to scope me at the moment and will monitor me

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Bunny69
Bunny69
in reply to timmey25

All I can suggest is investigate cytosponge trials yourself to see if you fit criteria. If so ask gp again and make them aware of your concerns. The last thing they should do is let you suffer from same symptoms your Mum had. There is a catch it early campaign on now to look in to as well .

Trying not to frighten you but we were not aware it could have been cancer and I couldn't swallow but even with the red flag symptoms I was not taken seriously and they thought mine had spread to lung when they found tumour that they thought was hiatus hernia and was on scan. They told me lots of people have that. So they did all they could for me and all guidelines have been met.

Good luck .

Bunny

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timmey25
timmey25
in reply to Bunny69

I am totally on this now I have private medical insurance my mum diagnosed 7yeats ago with hitaus hernia then gets ec 12/2018

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Bunny69
Bunny69
in reply to timmey25

I was told I had achalasia which causes dysphagia due to lower sphincter not relaxing. The consultant I was then referred to asked me if I had a hiatus hernia and achalasia. No idea how I can tell but I said so I have been told, his reply was you cannot have both. In most cases I think a hiatus hernia causes the lower sphincter to relax which allows gastric acid up above junction and causes damage which can lead to adenocarcinoma. I think the numbers for achalasia are 1 in 100,000 and adenocarcinoma is 10 in 100,000. The ogd in my case did not biopsy goj but did sample 2 and 3 cms above. The cancer was found at junction.

Keep asking the gp for help. I think a lot of the population will have a hiatus hernia and many will have no idea but if it is causing reflux it needs attention. Have you had ogd yourself at all?

Bunny

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timmey25
timmey25
in reply to Bunny69

What is ogd

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Bunny69
Bunny69
in reply to timmey25

It's the endoscopy examination that looks for a cause of symptoms .

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timmey25
timmey25
in reply to Bunny69

No my doctor who is an ent specialist said he feels it is unnecessary at the moment put me on opeorazole to control it

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Bunny69
Bunny69
in reply to timmey25

Ok, obviously the OPA is full of info and advice but have a look at heartburn cancer and Barretts Wessex for more sources of info. As I said I am not trying to worry you I just don't like hearing stories where patients are told not to worry about something only to then be told there is cause for concern or they needed to catch it earlier to attempt to cure it. Best of luck.

Bunny

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timmey25
timmey25
in reply to Bunny69

Hi bunny do u live in the UK

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Bunny69
Bunny69
in reply to timmey25

Yes mate, am in north west england.

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timmey25
timmey25
in reply to Bunny69

Thanks so much for the information I am not letting my symptoms slip. Through the net my mum was diagnosed with a hitaus hernia seven years ago no follow ups at all then gets ec

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Bunny69
Bunny69
in reply to timmey25

The unfortunate thing is at the end of all the tests if cancer is found the time wasted testing in the scripted order then makes the disease less treatable. I would say to anyone with any form of reflux or heartburn to not try and put up with symptoms but seek medical help. My daughter has much worse reflux than I ever had and we have seen geneticist to see if there could be link but they feel it is bad luck rather than genetics. If you can find a local OPA meeting near you it would help keep you up to date. I think cytosponge and the breath test that Professor George Hanna is developing has the potential to find the disease years earlier than endoscopy and biopsies which doesn't sample enough of oesophagus and is vague in protocol of sampling sites. So when histology says biopsies negative for dysplasia it actually just means at those tiny specimens not within 1 or 2 cms . False negatives are not uncommon. Another thing we weren't told until after a lung biopsy because the consultant thought I had mets to left lung . 25% chance of negative result being false which to me means a 75% chance the negative was correct. But they decided it probably was mets, turned out it wasn't. As in any of these cases it is a rollercoaster of emotions as you know. You just have to keep believing and fighting. I am lucky as I have had my operation so am in a better position than I was in May of last year. Hope I have helped in some way without worrying you more than you already are, the vast majority with symptoms of reflux don't go on to develop into cancer but even if one person is helped by hearing these stories then that is reason to share. The reality of my journey to this point I believe cannot be normal and I doubt most would believe it if they read it. Keep in touch. Good luck with everything.

Bunny

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timmey25
timmey25
in reply to Bunny69

I will do so is ec hereditary I have been told it isn't

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Bunny69
Bunny69
in reply to timmey25

I don't know if it is but I know it is underfunded in terms of trying to find cure.

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timmey25
timmey25
in reply to Bunny69

I agree with you I have read it is the second most cancer now

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Bunny69
Bunny69
in reply to timmey25

The problem with a lot of these cancers are symptoms appearing at a late stage. That's why the sponge or breath tests are so important as the procedure is cheaper less invasive and far more tolerable so the likelihood is it will be far better than current diagnostic process which seems to try to rule out the easier to treat causes before finding cancer. Normally making curative pathway difficult.

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timmey25
timmey25
in reply to Bunny69

I am going to see a consultant that specialises in ec I will ask about this breath test and sponge test because scoping all the time I personally think it disturbs things

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