Reflux despite PPIs

I know reflux has been discussed a couple of times, but i can't find anything useful and im going mad! I am on 20mg of omeprazole BD and gavison PRN (which i'm pretty much drinking atm!). I can't have metochlopramide or Domperidone (metachlopramide gives me vertigo and nausea to the point I cant stand, and domperidone is 'too risky' with my cardiac stuff) and these are the only Prokinetics I know of. When I was on domperidone TDS I was completely fine, but am now at the point where I constantly feel nauseous, have a horible sore throat and that nasty tasteof sick/acid-ness, every time I lean forward i feel like im throwing up in my mouth and I just feel generally dreadful. I have only recently stopped the domperidone, and I honestly dont care any more about the risk of cardiac issues, i just want to stop feeling this dreadful! :-(

I sleep with the bed at an angle, a good 15/20cm undet the feet of my bed. I dont eat greasy or spicy foods atm. I dont eat for an hour or so before bed (any longer than that i just lie awake hungry all night - stupid pred) and the last thing i eat tends to be BRAT foods. The only thing I have yet to start doing is eating with my moning tablets - not something i've ever done, but thought it might help with the pred - going to start that as of tomorrow - I go back to sleep after my meds, what do we think the 'minimum' amount i need to eat to protect my stomach without then making me get more reflux when i go back to sleep!

Is there anything i'm missing? I was wondering about trying some zanac OTC and then talking to my GP about changing my citirizine to that, and was going to start taking 'gaviscon dual action' which has the antacid and the thing that makes a layer over your stomach before I get symptoms. I'm taking regular pain meds anyway, but i'm getting virtually no sleep coz i'm so uncomfortable. I use ondancetron when the nausea gets bad, or very occasionally buccastem (but i dont think thats great to use often, although ive never been formally told this) and I have an anasthetic throat spray and strepsils to get rid of the sore throat and the nasty taste! Anything I can do to feel a bit better would be amazing!! I think i'm willing to try most things! I just wish I could find a prokinetic I could take tbh!

If it makes a difference im currently on Pivmenicillin (not sure on the spelling), 35mg of pred, hydrocortisone, cetirizine, uniphyllin, terbutaline, budesonide, formeterol, omeprazole, ivabridine, flecanide, fluoxetine, Nefopam, Paracetamol, Ipatropium, montelukast and calcichew as regular meds. Then have PRN salbutamol, cyclizine, buccastem, ondancetron, (tramadol/coedine/dihydrocoedine/oramorph but the idea is to not take these obviously! I am allowed to make the call, but i've decided I don't want to be taking opiates at home for 'daily' symptoms), Gaviscon and Piriton. Is there anything in that list that is going to be doing anything disasterous? Obviously the regular meds I can't just change, but can discuss with my GP, and the PRN stuff i can stop/reduce.

Thanks for any advice guys! I'm feeling properly sorry for myself, and I know when I get grupmy and tired I don't always think of the obvious - but i'm at my wits end!

11 Replies

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  • Hi Soph,

    As well as eating with pred, are you eating with uniphyllin as you are meant to? Are you on Symbicort? As I believe that contributes to my reflux. Also, have you given up caffeine as that is one of my triggers too. I hope you get it to a bearable level soon!

  • Will make sure i eat with uniphyllin and pred if that can do it! Not on symbicort and due to my heart things already cut out caffine! Have got some Zantac and Gaviscon, hoping that'll do some good tonight!

  • I would get you omperzole upped to 40mg BD... I've mentioned before about Bacolfen. Maybe see gastro

  • Soph, will reply properly tomorrow, can't be doing with lengthy posts on my iPad, it's hard work lol.

  • Thanks for the advice guys - hadnt heard of baclofen being used for reflux - must be worth mentioning at some point!! And will discuss the 40mg BD!

    For now we've decided to risk the cardiac stuff and i'm back on the domperidone. Not ideal, but I was convinced i was dying!! We still need to work out a long term plan, but i dont know what we'll be doing next - GP might want to reffer me to gastro - not sure, but i kinda hope not - i feel like im under too many different docs as is - maybe someone lese will be willing to talk to gastro without actually reffering me!!

  • I know reflux has been discussed a couple of times, but i can't find anything useful and im going mad! I am on 20mg of omeprazole BD and gavison PRN

    Omeprazole doesn't actually stop reflux - thats not how it works. Reflux is a mechanical problem, and omeprazole just inhibits gastric acid secretion so that whatever you are refluxing is less acidic and does less damage. I was taking 80mg of omeprazole a day and still having horrific reflux (40mg BD). I now take only 20mg a day as I have found other ways to manage my reflux, and I refuse to take such a high dose and put up with all the side effects when it doesn't actually reduce the problem!

    Alginates such as gaviscon form a 'raft' or barrier above the food in your stomach to reduce reflux. For this reason it needs to be after food and before you go to bed. Eating after having the gaviscon will render it null and void.

    I sleep with the bed at an angle, a good 15/20cm undet the feet of my bed.

    No where near high enough if you are experiencing severe reflux - sorry if thats not what you want to hear! Do the maths and look at your bed from the side. 15-20cm under the top feet of you bed gives a tiny slope. Now imagine a giant protractor with the flat side on your mattress. The slope, or 'raise' needs to be an absolute minimum of 30 degrees, but the closer to 45 degrees the more likely to be effective. That means sleeping halfway between flat, and bolt upright (90 degrees). This simply cannot be achieved with soft pillows, or a 15-20cm raise. Im not trying to teach you to suck eggs, but as someone with refractory lung infections and repeated aspiration pneumonia for almost four years, I now have this NAILED! :) To sleep at this angle, you need a made to measure foam wedge which is a 45 degree angle, with another one under your knees to stop you slipping down flatter in the night, a purpose made mattress raiser, or an electric bed. I now have an electric bed, as aspiration pneumonia is simply too dangerous for me now as I have barely any lung capacity left. If we go away anywhere, I take my more portable mattress raiser and stick pillows under my knees. Doing this has totally stopped my nocturnal reflux, and reduced my lung infections by about 90%.

    I dont eat greasy or spicy foods atm. I dont eat for an hour or so before bed (any longer than that i just lie awake hungry all night - stupid pred) and the last thing i eat tends to be BRAT foods.

    This won't stop you refluxing. When you eat, food stays in your stomach for around four hours - up to six hours if fatty. So, eating an hour before you go to bed just means you have food sitting around waiting to reflux. If you are doing this, then its even more important that you sleep in a much higher position as your stomach isn't empty.

    The only thing I have yet to start doing is eating with my moning tablets - not something i've ever done, but thought it might help with the pred - going to start that as of tomorrow - I go back to sleep after my meds, what do we think the 'minimum' amount i need to eat to protect my stomach without then making me get more reflux when i go back to sleep!

    Why don't you take your pred when you get up, with your breakfast? If you must eat and go back to sleep, then I would suggest a slice of toast. Bland, digestible and better than a glass of milk, as the more liquid something is, the more likely it is to reflux. So, minimal fluid followed by a slice of toast/bread perhaps.

    Is there anything i'm missing? I was wondering about trying some zanac OTC and then talking to my GP about changing my citirizine to that, and was going to start taking 'gaviscon dual action' which has the antacid and the thing that makes a layer over your stomach before I get symptoms.

    I wouldn't suggest adding any other things, Zantac has a weak action compared to omeprazole, and it won't address the mechanical issues. I certainly wouldn't add anything without discussing with your GP. What do you want to change your cetirizine to? Normal gavison is a raft forming alginate so there is no need to change to the gaviscon dual action. Its also a marketing ploy, as the active ingredients are the same ;)

    I'm taking regular pain meds anyway, but i'm getting virtually no sleep coz i'm so uncomfortable. I use ondancetron when the nausea gets bad, or very occasionally buccastem

    Ondansetron gives me terrible reflux, as it slows my gut down. Brilliant anti-emetic but I try and avoid it unless desperate because of this. You may, or may not have this issue. Buccastem can cause GI disturbance when used as an antipsychotic, but I don't know if this is the case when smaller anti-emetic doses are used.

    If it makes a difference im currently on Pivmenicillin (not sure on the spelling), 35mg of pred, hydrocortisone, cetirizine, uniphyllin, terbutaline, budesonide, formeterol, omeprazole, ivabridine, flecanide, fluoxetine, Nefopam, Paracetamol, Ipatropium, montelukast and calcichew as regular meds. Then have PRN salbutamol, cyclizine, buccastem, ondancetron, (tramadol/coedine/dihydrocoedine/oramorph but the idea is to not take these obviously! I am allowed to make the call, but i've decided I don't want to be taking opiates at home for 'daily' symptoms), Gaviscon and Piriton. Is there anything in that list that is going to be doing anything disasterous? Obviously the regular meds I can't just change, but can discuss with my GP, and the PRN stuff i can stop/reduce.

    I also find that tramadol causes me to reflux, as again both tramadol and opiates slow the gut down. Anything which slows the gut down means stuff sits around for longer, and thus if you are prone to reflux, there is stuff sitting there to reappear. I have to say, that prescribing someone tramadol, codeine, dihydrocodeine and oramorph on top of nefopam and paracetamol seems a little irresponsible... if you're experiencing that degree of pain, I would suggest a referral to a pain management centre, where they can look at your pain management a bit better and with specialist eyes. I have found the pain management clinic to be fantastic both in terms of better pain management and a more rational approach to treatment.

    Pivmecillinam can cause oesophagitis, nausea and vomitting which probably won't help your situation... flecainide also can cause GI disturbance. Monteleukast can cause dyspepsia and this includes reflux..

    You are unlikely to be in a position to change many of these things, so concentrate on the things you can change, like not eating or drinking a couple of hours before bed, and improving your sleeping position. Just doing these two things have totally changed my aspiration and reflux rate - in fact my last 24hr monitoring showed no significant reflux once sleeping at 45 degrees - a far cry from previous ones! The simple fact is that food and liquids cannot travel up a steeper hill, so the higher you sleep, the harder it is for stuff to travel up your oesophagus.

    Lynda

  • Thanks for such a detailed response Nurse Furby - reflux seems to be your area of expertise - you should go into gastro!! :-)

    I was aware that omeprazole doesnt actually stop the reflux - I guess in my head on a high-ish dose of the stuff I didn't think I would be getting such extreme symptoms - i guess no number of PPIs can stop your stomach being acidic, so you're always gonna feela bit rough!

    Thanks for the Gavsicon tip, i did look carefully at the normal Gaviscon, and couldnt see any stuff about it making a layer - hence thinking the two were different - they are sneaky with things like that! :-) Just need to work on being able to take it without gagging now!! Ugh!! Hate the stuff!! And i'm very careful about it being the last thing i have before I sleep - have to make a conscious effort to move my drink away from my bed!

    couple of questions about the raised bed thingy - 1) where do you acquire one of these? 2) I move between uni and home, would a 'single' sized wedge work if i used it at home in my double (bearing in mind that I am a very restless sleeper and tend to have about 30-40 hypnic jerks at night as i'm falling asleep - i'm worried im just gonna fall off)? 3) In your experience, have you ever found a way to sleep on your side while at the 45 degree angle? I ask because I am never normally able to sleep on my back, i get very uncomfortable in my chest - my cardiologist thinks it might be something to do with the cause of my cardiac stuff - but he's not sure, so as soon as i lie back (even in hospital beds which are very raised) I feel really uncomfortable and cant catch my breath till i lie on my side.

    I'll have an experiment with food - while i'm on the domperidone short term - see if i can find anything that means I dont wake up starving at 2am! I guess I will just make sure to eat something bland and 'easy' and eat it as long as possible before lying down.

    The reason I don't take pred when I get up, is that I often sleep from about 10pm till midday. I find that if i take my pred at midday then I am exhausted by 10, but cant actually sleep, and then get into a bit of a nocturnal pattern eventually. I might be missing a really obviousl solution - do tell me if you can think of something i cant! I guess theoretically I could sleep on the sofa after pred - then ill be fully sat up.

    Would I know if ondancetron caused my gut to slow down? I've been told not to take cyclizine as that specifically aims to reduce how much your stomach churns, which is why I took ondancetron instead - i thought that did something to receptors. Never noticed any gastric side effects - but I dont with cyclizine either!

    My GP is weird about reffering me to the pain management team - and I don't really know why. I've mentioned it before and she seemed to think it was a ridiculous suggestion - but it's not as though she doesnt believe my pain (otherwise she wouldnt so clearly explain what is causing it, and I blooming hope she wouldnt prescribe all those meds for it) so I have no idea why she found the idea so odd! TBH, i have found that with regular nefopam and paracetamol i'm not needing anything like the opiates i was needing before. I have had 30mg of coedine in the last fortnight. I think regular paracetamol isnt enough to cover me, and in the absence of other options we were gonig to regular opiates (of different types to see what was most effective) but the nefopam works well. So probably not an urgent thing. The hope is as well that once i stop getting infections and having horrible attacks (which i hope will happen, and soon!) then i'll stop needing painkillers at all!

    I agree - the 'problem' meds cant really be stopped or subsititued - a few of mine can, but not those :-( worth a shot!

    Thankyou sooo much for all the info and advice - sorry about all the questions - just desperately trying to optimise my use of the 'domperidone' window to get the best possible plan for if/when we have to re-stop it! Its really appreciated!

  • Thanks for such a detailed response Nurse Furby - reflux seems to be your area of expertise - you should go into gastro!! :-)

    LOL - unfortunately, I have had to become expert in managing it!

    I was aware that omeprazole doesnt actually stop the reflux - I guess in my head on a high-ish dose of the stuff I didn't think I would be getting such extreme symptoms - i guess no number of PPIs can stop your stomach being acidic, so you're always gonna feela bit rough!

    They will stop the acidity, but they won't stop you refluxing your stomach contents. However what you reflux should be less acidic if that makes sense. When I was on high doses of PPI's I also found I didn't digest my food very well (no surprise there, since gastric acid is a component of digestion!) and it sat around for longer in my stomach.

    Thanks for the Gavsicon tip, i did look carefully at the normal Gaviscon, and couldnt see any stuff about it making a layer - hence thinking the two were different - they are sneaky with things like that! :-) Just need to work on being able to take it without gagging now!! Ugh!! Hate the stuff!! And i'm very careful about it being the last thing i have before I sleep - have to make a conscious effort to move my drink away from my bed!

    Its not the nicest stuff is it lol! I checked in the BNF, its definitely a raft forming alginate, so don't waste your money on the more expensive stuff which contains the same ingredients ;-)

    couple of questions about the raised bed thingy - 1) where do you acquire one of these?

    okay.... foam wedges you can find on the internet, here are a couple. Or a foam supplier will usually make you one to size if you ask.

    healthandcare.co.uk/bed-rai...

    (this is a firm wedge, which is what you need to prevent you sinking flat - you can put pillows on the top for softness). You can see in the photo, the person is using two - one under the knees too, to stop sliding down.

    amazon.co.uk/Multi-Way-Wedg...

    and there are mattress raisers like this.. still need something under your knees to stop you sliding in the night though

    mountway.co.uk/content.php?... - this is the one which I have, I got it with my DLA money, and its the one that comes in the car with me if I stay with friends or go on holiday. I can't leave home without it, as just one night of sleeping flatter gives me aspiration pneumonia!

    If you type 'electric pillow lift' into google, and then click on images, you will see loads of different ones.

    At home we now have an electric bed, and this raises the knees as well as the head end. We got this from a normal 'bed shop' - specialist ones are horrifically expensive, (aint that always the case!) and I didn't want something looking hospitally. Its essentially two x 2ft 6 mattresses with split electric mechanisms and this fits into our existing king size bed frame. But you can get all sorts.

    2) I move between uni and home, would a 'single' sized wedge work if i used it at home in my double (bearing in mind that I am a very restless sleeper and tend to have about 30-40 hypnic jerks at night as i'm falling asleep - i'm worried im just gonna fall off)?

    Before getting our electric bed, I used wedges and pillows combined. I never fell off, and I tend to move around a lot at night. Its something you get used to (the wedge, not falling off LOL!)

    3) In your experience, have you ever found a way to sleep on your side while at the 45 degree angle? I ask because I am never normally able to sleep on my back, i get very uncomfortable in my chest - my cardiologist thinks it might be something to do with the cause of my cardiac stuff - but he's not sure, so as soon as i lie back (even in hospital beds which are very raised) I feel really uncomfortable and cant catch my breath till i lie on my side.

    This was my biggest worry. Because of my severe scoliosis, fused neck vertebrae, and squashed lungs, I can only sleep in one position - on my left hand side. Coupled with a back which has no bend (two bloody great steel rods inside it) I was convinced that sleeping upright wouldn't work. But it does. The important thing is to ensure that the wedge/support supports you down to your hips, so you're not bending sidewards at the waist which would be uncomfortable - and probably not good long term for your back. Im actually perfectly comfortable side sleeping at this angle now - again, when its new, it takes time to get used to, but its fine.

    The reason I don't take pred when I get up, is that I often sleep from about 10pm till midday. I find that if i take my pred at midday then I am exhausted by 10, but cant actually sleep, and then get into a bit of a nocturnal pattern eventually. I might be missing a really obviousl solution - do tell me if you can think of something i cant! I guess theoretically I could sleep on the sofa after pred - then ill be fully sat up.

    Ah okay I see where you are coming from...

    Would I know if ondancetron caused my gut to slow down? I've been told not to take cyclizine as that specifically aims to reduce how much your stomach churns, which is why I took ondancetron instead - i thought that did something to receptors. Never noticed any gastric side effects - but I dont with cyclizine either!

    I notice due to significantly increased reflux, and constipation when I use it - ondansetron turns my intestines to cement LOL. Marvellous anti emetic though. If you're not noticing either of these things when you use it, then hopefully its not having that effect on you :-)

    My GP is weird about reffering me to the pain management team - and I don't really know why. I've mentioned it before and she seemed to think it was a ridiculous suggestion - but it's not as though she doesnt believe my pain (otherwise she wouldnt so clearly explain what is causing it, and I blooming hope she wouldnt prescribe all those meds for it) so I have no idea why she found the idea so odd! TBH, i have found that with regular nefopam and paracetamol i'm not needing anything like the opiates i was needing before. I have had 30mg of coedine in the last fortnight. I think regular paracetamol isnt enough to cover me, and in the absence of other options we were gonig to regular opiates (of different types to see what was most effective) but the nefopam works well. So probably not an urgent thing. The hope is as well that once i stop getting infections and having horrible attacks (which i hope will happen, and soon!) then i'll stop needing painkillers at all!

    Not sure where you're GP is coming from there. Pain clinics are experts at pain management, GP's aren't... and I find her prescribing somewhat alarming. Its good to hear the nefopam is working for you. What is it for? You said infections and attacks.. are you talking about respiratory infections or something else? If you are having problems with repeated respiratory infections, it wouldn't surprise me if your reflux is causing these, and you are aspirating stomach contents (which is why I had a couple of years of persistent aspiration pneumonia). Have you had 24hr monitoring of your reflux with a probe, and manometry testing?

    Thankyou sooo much for all the info and advice - sorry about all the questions - just desperately trying to optimise my use of the 'domperidone' window to get the best possible plan for if/when we have to re-stop it! Its really appreciated!

    No worries, don't apologise for all the questions, its frustrating when you don't know how to improve things. Im on domperidone too, forgot to mention that. I take 20mg three times a day. Cant do without it, and since there are limited options for prokinetic drugs, I will stay on it. For me, the benefits outweigh the risks.

    Hope that helps :-)

  • Hello Soph,

    Good advice from NurseFurby.

    I may have some points to add. are your pred enteric coated i.e. red or standard white? My last lot, the GP prescribed enteric coated, not sure if intentional or not but we had been talking about reflux and domperidone (I'll come back to that). Made such a difference, I know there is evidence to say apparently it shouldn't and some suggest it affects absorption too.

    About the prokinetics, you are right. I asked exactly the same question. My GP has stopped domperidone as it has been withdrawn for long term use and with reflux on MHRA safety advice apparently with cardiac concerns. I have a different reason as well to not take it. Rather frustrating as it had been working well after several meds changes and there seems not to be an alternative. Bird, didn't know that about baclofen either! Is it an off label or unusual use by any chance?

    Omeprazole -agree, best not to take that amount. I was told similar as NurseFurby says and ok to double in the short term. Have you tried lansoprazole? Sometimes, changing to a similar drug can help.

    Otherwise, have you been referred to gastro or had a ph probe? I was referred by GP straight for a gastroscope more recently (no biopsies were done though) and the cons suggested I asked asthma peeps about a repeat Ph probe. Why do they not write these things down?! I had a Ph probe some time before as part of the difficult asthma work in the Brompton.

    Good luck with your pain meds. On an aside, do you know why you get so many infections? Have you been checked for an underlying cause which may be treatable sinusitis, bronchiestatis etc?

    So apologies if going over old grounds but hopefully some off my ramblings might help.

  • Bird, didn't know that about baclofen either! Is it an off label or unusual use by any chance?

    Looking in BNF, I think it must be an off label use, as it doesn't appear to be licensed for it.

  • Hi. I have recently had a severe (intensive care stay) after suffering my first severe Asthma attack. For the last month I have been being sick in my sleep and the Consultant said the reflux could have set this attack off. I am too on the anti - reflux meds but after such an attack they don't want this to happen again so I am due to have a bronchcoscopy to see if I have reflux. I also suffer with fibromyalgia which reflux is a common symptom. I may also have GERD (reflux) which can be caused by another problem within the stomach (hence the bronchcoscopy). I was just wondering if the docs have put your reflux down to a particular reason. Good luck with everything. If anyone reading this could look at my post I would be very grateful as I am still very worried. I really hope you manage to get it sorted. Best wishes.

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