1. Community
  2. Gut, bowel and stomach
  3. Reflux Oesophagitis

REFRACTORY GERD

Posted , 5 users are following.

janine95693
janine95693

Anyone heard of this?

just read an interesting article online.

refractory gerd seems to be the condition I may have. It is when despite being on PPIs for an extended period you don't get better. And apparently it's reasonably common!

im now taking pantoprazole 20mg twice daily: 30 minutes before breakfast and dinner., but my chest still hurts throughout the day. My previous problem of continual burping has gone away thankfully after being on digestive enzymes for 2 weeks, so think I had a problem properly digesting my food which is now sorted and I do feel much better(apart from chest pain).

anyhow article made me think about taking amiltriplyene again which I have used in the past for other pain issues( eye/facial pain and hip pain). Worked well for those conditions as amiltriptylene is a nerve blocker.

i am desperate to get better, but will keep doing everything else as well ( DGL, alkaline diet, sleeping on left with a raised bed and eating 3 hours before going to bed)

2 likes, 19 replies

19 Replies

  • EileenH
    EileenH janine95693

    Posted

    This isn't my usual field of play but for some reason I clicked on the notification - and lo and behold I may have something to contribute!

    A lot of patients on steroids are given PPIs because of potential gastric problems and some have a  load of problems with them so I have done a lot of reading about it. I discovered a couple of months ago that PPIs fail to work in 30% of patients. Now a drug not working does happen occasionally but I feel failure in 1 in 3 is rather a lot for it never to be mentioned by your doctor! Has it ever been mentioned to you? Have you tried ranitidine (Zantac, older but almost as effective and fewer side effects as it is a different mechanism. It seems a lot of gastroenterologists favour using it, GPs can't see beyond the new and wonderful PPIs they were on the receiving end of the advertising for from reps).  I assume you also eat very small meals?

    I assume too you have had endoscopy to see if there is any damage there that isn't healing since I also know that the reflux can continue and cause discomfort even though there isn't the same acid damage but I don't remember what was the recommended course of action there - search for non-acid reflux I think to find info. Have you been tested for lactose intolerance or other gut problems? Was that the reason for the digestive enzymes?

    • janine95693
      janine95693 EileenH

      Posted

      Hi Eileen,

      yes I had been taking Ranitidene ( Zantac) 300 mg twice a day before meals since January 1 ( after trying pantoprazole 40mg since November, once daily before breakfast ) . It seemed to work for a couple of days except for burping which then developed a few days in and got progressively worse. Then chest pain/ heartburn came back. Waiting on endoscopy, but have already had a negative chest X-ray ( no hernia) and negative ultrasounds ( no problems with stomach,pancreas,liver or gall bladder).

      a pharmacist sold me the digestive enzymes when I told him about the excessive burping, which stared to work within about 4 days.

      i have been avoiding lactose 

    • EileenH
      EileenH janine95693

      Posted

      What a pain - I do hope the endoscopy appointment is quick and they come up with something. Does a hiatus hernia always show up on ordinary x-ray? It is so horrid when you have sore feet or a sore stomach isn't it - there's very little we do that doesn't involve using one or the other and there comes a point where you just want it not to hurt any more.

      All the very best - and fingers crossed for an improvement.

    • janine95693
      janine95693 EileenH

      Posted

      Oops sorry iPad playing up

      i have been avoiding lactose ( no dairy products) and gluten ( no bread etc only brown rice crackers and oat biscuits and oatmeal) . I have had a negative test for allergies many years ago but understand that allergies can develop as we age. I eat 6 three small meals a day 3 hours apart.

      Woke up this morning with no pain so will take another amiltriptylene 10 mg late this afternoon and see how I go.

    • EileenH
      EileenH janine95693

      Posted

      I know that some doctors believe that cutting carbs can improve reflux a lot - but you must be on a fairly low level of carb anyway. Trouble is you end up leaving out so many things you don't know which really helped don't you. You should move here - we have a very high level of lactose intolerance and coeliac disease up here in the Italian mountains so there are LOADS of things that are lactose and/or gluten-free. Saves too much deprivation!

      Anyway - hope the amitryptiline continues to work.

    • janine95693
      janine95693 EileenH

      Posted

      Hi Eileen, no a Hiatus Hernia doesn't always show up on an ordinary X-ray so I could still have one. Endoscopy will show for sure. I have also heard it will confirm any gluten intolerance if I have developed this.

      thanks for your advice Eileen, much appreciated.

    • EileenH
      EileenH janine95693

      Posted

      Didn't think it did. I haven't given you any advice that helped though have I? But I have loads of sympathy on offer if that helps  :-) - wishing you all the very best...
    • janine95693
      janine95693 EileenH

      Posted

      Hi Eileen,

      had my endoscopy today and I do have a small Hiatal Hernia after all.

      no other problems found, so am waiting now for follow up appointment to see what they suggest. Feeling of relief to know I don't have any serious problems so hopefully I'll get better now if I stick to my diet and pills.

  • robert41989
    robert41989 janine95693

    Posted

    Hi,

    I was on pantoprazole for 6 months. Recently I came to realise it was having no effect at all so I've stopped taking it.

    Like you I'm trying a low acid diet now, and and trying to avoid anything that will make mucous thicker, like dairy. That eye and face pain your experiencing is probably sinus pain. We all seem to be suffering from the same symptoms.

    Acid reflux, post nasal drip, sinus pain. My eyes have been hurting recently leading to my decision to drop pantoprazole. I don't know if its connected but there's no point in taking drugs that don't work. None of these drugs can be considered good for you despite doctors so casually reassuring us that they're fine for long term use. I doubt doctors really question what the drug reps are telling them.

    What are these digestive enzymes you've been taking?

    Regards

    Robert

    • janine95693
      janine95693 robert41989

      Posted

      Hi Robert,

      yes the eye/facial pain was sinus and the Sinus specialist told me to take amiltriptylene if it came back. broke my nose when I was young.

      got myself some progressive glasses now and eye pain isn't a problem anymore ( partly I think because the slight pressure on my nose from wearing the glasses has a good effect on my sinus pressure)

      The digestive enzymes are available from the chemist/pharmacist. Mine are Natures Own. Made my excessive burping and back pain go away so am thrilled, just have chest pain to deal with now. it has taken 7 hours for me to feel it today so not too bad, Am going to take another 10mg of amiltriptylene this afternoon. 

    • robert41989
      robert41989 janine95693

      Posted

      thanks Janine.

      I'll try the digestives myself and we'll see if they make any differnce.

      I get the occasional back and hip pain but having slipped a disc in my lower back decades ago I can't differentiate between back pain, and pain from something else. I'll refrain from speculating as it will only cloud the issue.

      Regards

      Robert.

    • janine95693
      janine95693 robert41989

      Posted

      Hi Robert,

      my back pain was between my shoulder blades which apparently related to Gerd.

      anyhow it disappeared with the burping thankfully.

      out for. Healthy jog now to keep working on being relaxed as I think also Stress has a lot to do with some of our problems

    • janine95693
      janine95693 robert41989

      Posted

      Don't I know it.

      good news just found out I am having my endoscopy next Monday so hopefully then there will be some answers

    • robert41989
      robert41989 janine95693

      Posted

      Lets hope so.

      When you have it done make sure you stress to the specialist doing it that your'e looking for causes that will explain your symptoms. When I had mine done it felt like they were just looking for cancer or tumours and when they didn't find any they lost interest. They just casually mentioned I had reflux, and walked off. No discussion of causes.

      I swear these specialists spend all their time planning their next holiday, and sleep walk through these things. God help you if you have to ask them to think outside the box.

      Anyway. Good luck with it. Hopefully you'll have some good news to report.

      Regards

      Robert

    • janine95693
      janine95693 robert41989

      Posted

      Hi Robert,

      just had my endoscopy done and all they found was a small Hiatus Hernia ( which hadn't shown up on the chest X-ray).

      asked the specialist if he could tell from endoscope if I had low or high stomach acid. He said no.

      apparently there will be a follow up visit where I may get to ask some questions. I will be making a list"

    • robert41989
      robert41989 janine95693

      Posted

      Hi Janine,

      Well at least they found something they can fix. The hernia may have been a source of small pain you hadn't quite realised was caused by that.

      Doesn't sound like they're keen to focus on your acid problem though. These guys look for cancer and tumours and anything outside of that is too trivial for them.

      I'm not a doctor, I'm an engineer. Like you I'm trying to figure out whats going on with this acidity issue and the doctors and specialist don't appear to be willing or capable of focussing on this issue.

      Will they be going in again to fix the hernia?

      Regards

      Robert

    • EileenH
      EileenH robert41989

      Posted

      Everybody has a very acid environment in the stomach - it is essential to digest food and absorb certain nutrients. The lining of the stomach is designed by nature to resist the acid so normally it isn't a problem. They arise if for any reason the stomach contents escape back into the gullet (oesophagus) where the lining is different and NOT acid-resistant or if damage is done to the stomach lining so the acid gets at the underlying tissues. This can be due to bacteria irritating the stomach wall and causing what is effectively broken skin or to some drugs or foods that can do the same. There can also be mechical problems such as hiatus hernia or a weakened closure to the stomach which allows stomach contents to regurgitate due to the pressure from below.

      These days they seem to have the standard approach of "stop the acid production and that will cure all" and usually hand over PPIs (omeprazole and co). But PPIs don't work in about a third of patients and anyway there can still be non-acid grastric reflux that causes problems and PPIs don't do anything for that either.

      You may have to look for another opinion - everyone has a different take on it all.

    • robert41989
      robert41989 EileenH

      Posted

      Hi EileenH,

      Yes, that may be true. Unfortunately the doctors and specialists I've seen seem to show no inclination to test and pin point the exact cause.

      Leaving me and us to speculate and fumble our way through this as best we can.

      Regards

      Robert

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.