Debilitating acid reflux, sleep deprivation, end ... - PMRGCAuk

PMRGCAuk

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Debilitating acid reflux, sleep deprivation, end of my tether!

strawclutching
strawclutching

Been suffering dreadful acid reflux even though I'm on the maximum Omeprazole dose while taking Prednisolone. It's got so bad I can't lie down, the acid is coming up into my throat and I've not slept for days. After trying me on Ventra for a few days which made no difference, GP says there's nothing more he can prescribe to help. I can't bear to think about food, because of the pain I know it's going to cause, and I also have awful nausea. I'm so tired I could cry. Tried cutting out all the acidic foods, which has made no difference. Can anyone offer any advice please?

140 Replies
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The GP can refer you to a specialist ask him to do a referral for you

jinasc
jinasc in reply to Angel20

Try this:

Suffer from Acid Reflux (Heartburn)

Juice of one lemon (unwaxed) divide into three, add to glass of water - take before your meals ie three times a day – acid reflux gone.

If you put the lemon in the microwave for 1 minute – twice as much juice.

It comes from a series of Tips and Tricks which we gathered from patients over the past 9 years.

I thought lemon juice was citric acid, and to be avoided? I'm worried I'll make things worse, but thanks for the tip I'll keep it under my hat for the time being.

Thanks Angel. I wonder why he didn't suggest that already. I've been pestering him for two weeks.

Ask your GP to refer you to a gastroenterologist. No GP should write off a patient because what he prescribed doesn't work: makes me angry when I hear things like this. In the meantime, do try jinasc's suggested remedy. I hope it gives you some relief.

Thanks, I'll do that.

Had the same problem, had endoscopy, they found "grit" due to Adcal the calcium being the problem.....stopped that, have had odd attacks and take gaviscon.....it helps after a few days....

I haven't started the Adcal yet. Was waiting for the reflux to settle down first - thinking it would have resolved by now.

Horrible, hope it eases soon...all the extras we get makes it so much harder....

Hi I was on 20mg of Omeprazole had the same problem put up to 40mg made no difference

Now take the 20mg in morning and dose of Gaviscon Original aniseed flavour at night ,have raised bed by folding up spare duvet under mattress where pillows go .

Thought this would stop me sleeping as I like to be flat and sleep on my side but no problems at all.

Have looked at bed wedges but thay say you need to sleep on you back when using one .

I have had very little problems since, I may wake up in the morning roll onto my back and feel it start but sit up for a while and its gone straight away.

Thanks Rose. Does sleeping on your back make it worse, even if your back is raised? I like to sleep on my back. And flat. It's so hard any other way.

Hi Yes if you sleep flat on your back the acid comes up from your stomach

So sleeping raised helps

Just google acid reflux lots of infomatoin to help

Mine is caused by Hiatus Hernia

God, I hope I haven't developed one of those too.

I expect its just the Preds as you say started soon after you started taking them .I am on meds for other health conditions as well

That’s awful for you . Right from the beginning I have always taken my pred with very thick yogurt, and it has worked well for me . Hope that you can find something that works for you . It’s worth a try .

Is the yogurt your breakfast? Or is it an extra just with the Pred?

No it isn’t my breakfast. I take one large spoonful, then a tablet , another large spoonful and another tablet , finishing of with more youghurt. Must be the very thick one

PMRpro
PMRproAmbassador

If you are in the UK he can prescribe enteric coated/gastroresistant prednisolone and that DOES make a difference for many with gastric problems on ordinary pred for whome a PPI doesn;t help. Or he could see about trying depotmedrone injections which can be used (see tangocharlie's posts_ and bypass the stomach.

Did you start the omeprazole at the same time as the pred as a "just in case"? It COULD be the PPI contributing to the problem. So trying an H2 inhibitor such as famotidine makes more sense than just abandoning ship when a second PPI didn't work either. Ranitidine may be unavailable - it isn't the only option.

And I would be having words with a GP who doesn't consider this something that needs more than a shrug.

The reflux started when I first started the Pred, because the doc didn't prescribe a PPI with it. I was admitted to hospital for an endoscopy, where they gave me intravenous hydrocortisone and nil by mouth for a day and a half, so my stomach had a rest and I went home with PPI's and absolutely without a problem for 3 weeks. Then I started tapering the Pred and the GP told me to drop the evening PPI at the same time. That was a disaster. The reflux returned with a vengeance, and although I restarted the evening 40mgs Omeprazole, the reflux has remained and become worse over two and a half weeks. I wish they'd readmit me and do the same again to see if my reflux disappears again, but that's not likely to happen. I was told to get back in touch with the GP if I start vomiting blood! Surely by then I'd have a burst ulcer???

PMRpro
PMRproAmbassador in reply to strawclutching

It will end up as an emergency if it is left - if only because you stop eating and drinking.

I'm close to that now. Can't face thinking about food. Makes me want to throw up.

PMRpro
PMRproAmbassador in reply to strawclutching

You must get in touch with your gastro consultant - between them they MIGHT be able to put in for emergency use of tocilizumab because that will be the quickest way to get the pred dose down. But your GP is obviously useless ...

I'll see what's suggested tomorrow by the rheumatologist, and ask about the tocilizumab. If I get a negative response I'll ask to be referred to a gastro consultant.

PMRpro
PMRproAmbassador in reply to strawclutching

The approval for TCZ currently is for difficult to treat relapsing GCA - not sure if there is an allowance for patients unable to be treated with pred.You probably need to involve both.

But presumably a lower dose of the Pred if they're both use together.

I had the same problem as you with Omep' and after a while the G.P. suggested that it had damaged my oesophagus so I ended up with Gaviscon ? Not sure what resolved the problem temporarily but I took advice on this forum and used yoghurt for a week,the second thing was that due to a broken spine plus damage at the L3/4 level we bought a very very expensive motorised bed,(to be fair I was in absolute agony and been on morphine 24/7 ever since,)thus allowing me to adjust the angle for sleeping which helped both problems.

However the initial problem eased for a while but then returned,couldn't face food,(morphine doesn't help,)and still struggle to eat normally in that when faced with a meal my body now switches off.

I have lost almost two stone but the wrong way but my G.P. hasn't a clue what to do so my advice is to do what I am now trying to do ............. find another G.P.

Sorry I can't help more but don't let the problem run on too long.

Good luck.

Thanks so much. How dreadful for you. How are keeping weight on?

Worryingly I'm not keeping weight on but for now I tell myself that I needn't worry as at the moment I am losing the weight I put on in the early stages of using Pred',nearly three stone. Another half a stone and I am back to where I was but it is definitely not a good way to do it.

You're lucky to have that weight to spare - for the moment. I'm losing it because I feel nauseous at meal times, and I'm only eight stones. Probably less by now.

Hi, reflux was the start of my problems causing endless vomiting and crazy bad anaemia. This resulted in all the tests as was losing weight and zero energy. Omeprazole was my wonder drug, so thankful for it. I’m just cutting down on the pred as I was getting really bad shakes, on 13mg now. Slipped on leaves on Sunday and tore my thigh muscle and fractured a toe. No hope for clumsy me. My Dr. Is a bit what is your problem get on. So I know how you feel, the Lemon thing sounds completely wrong, but if the others in here say try, go for it, they have the T shirt lol. Best wishes to you.

Thanks Shandkydd. I have the shakes too, and dizzy from time to time. Last time I had bloods taken, the nurse said my veins were wobbling about under my skin and she had to aim the needle with the movement. I slipped on ice a few years ago and had to have my wrist reinforced with an insect shaped construction of metal. My daughter said it looked like a praying mantis on the X-ray.

I have asked the GP for the enteric coated Pred, but was told that as long as I'm taking the Omeprazole there would be no need for that.

Ditch the omeprazole and get gastro resistant preds. It's one less drug to have to worry about. You may have to taper off the omeprazole,rather than just stopping it, think it depends how long you have been on it.

Thankfully, my GP finally agreed to change my prescription over to the gastro resistant Pred just last evening on the telephone. She said she had heard that they weren't much different for some patients, but at least I've got a chance to try them. Yes, as long as they work I will taper off the Omeprazole gradually. been on the max dose for about 6 weeks now, so it may be a long haul.

tangocharlie
tangocharlie in reply to PMRpro

Was going to suggest the same thing as for me Omneprazole and all the 'prazoles are the devils work, they actually cause stomach problems. I make sure I take Pred with food or use famotidine occasionally as I'm prescribe it as a H2 blocker for the histamine issues - ranitidine has been withdrawn from the market. The trouble its it is hard to wean off Omneprazole once you're on it

That's what worries me. I want to get off all these meds asap, like we all do. I time my Omeprazole and breakfast/Pred very carefully, but still feels like I've swallowed bleach - all day and all of the night -as The Kinks sang many years ago.

Totally agree here. Just look them up - and no-one should stay on them for long.

Omeprazole doesn’t suit everybody and on high doses I found it was useless. However, your GP in just shrugging their shoulders is unprofessional because acid reflux that bad is going to cause big problems so needs a specialist opinion if only to monitor you properly. Sorry, if you’ve said, but have they tried a good old fashioned H2 antagonist type? If you’re UK you must be a very good candidate for enteric coated Pred too. For me that was a game changer.

I asked one of the GP's for the enteric coated Pred three weeks ago when the reflux returned, but was told as long as I'm taking a PPI, I shouldn't need it. However it's got worse since then. I don't know what a H2 antagonist type is?

PMRpro
PMRproAmbassador in reply to strawclutching

Ranitidine, sold as Zantac, was an H2 antagonist but it is off the market. Famotedine is also one and the next in line now ranitidine is gone.

They also stop the production of acid but by a different mechanism so also have different side effects. The PPIs (omeprasole and co) are claimed to be far superior - they are more effective at stopping acid but also cause a lot more trouble for people when they don't work. It is said 1 in three do well on them but 1 in 3 have intolerable side effects and for the other 1 in 3 they simply don't work at all.

Saying you don't need enteric coated pred because you are on a PPI is a piece nonsense - it obviously isn't working.

I suppose I'm confused because it worked at first, then because I missed a dose on the GP's instructions, it all started to go wrong and I can't get back to where I was.

PMRpro
PMRproAmbassador in reply to strawclutching

The stopping probably was enough to induce the rebound acid production and now you can't get it under control OR damage has been done and the stomach/gullet lining is so irritated it can't heal. Does Gaviscon help? And as Snazzy says, different doctor. And if nothing else - try ringing 111 and ask for a doctor to provide advice because your GP refuses to.

I've got an antacid called Peptak which I've been guzzling far too much. But the effects are not very long lasting, certainly not for going to sleep. Haven't tried Gaviscon. Spoke to a medic on NHS 111 this a.m. and someone was supposed to ring back, but my phone was engaged for 20 mins so I may have missed the call. Rheumatology nurse is going to speak to consultant but that won't be until tomorrow. GP is sending nurse to take bloods tomorrow. I said I was going to stop taking the steroids because I'm at rock bottom with the side effects. She begged me not to.

PMRpro
PMRproAmbassador in reply to strawclutching

You can't just stop the pred cold turkey or you will be at risk of being REALLY ill so please don't.

I know I can't. Just felt desperate when I said it. My nose keeps bleeding.

From my own experience it takes a couple of weeks to get the real benefits from gaviscon, so if you do try it, don`t give up too soon....I nearly did.....

I'll bear that in mind, Longtimer.

So, anything that stops the secretion of acid like PPI’s and H2 antagonists will cause an increase in the hormone gastrin to counteract the drop in acid levels which isn’t a good thing but necessary right now. These meds don’t last 24 hours so the effect of the gastrin (to make extra acid) gets a chance to work when the dose in the body drops. For some, that results in a torrent of acid and I suspect just lowering the acid even more by upping the dose just makes the body make even more gastrin. I guess this is probably what the lemon juice is doing, as in tone down the body’s attempt at getting the acid back up as a pacifier of a weaker acid. It didn’t work for me but does others, but as you are finding there are big variations in people. Personally I found the change to the H2 type was lovely for a couple of weeks and then, boom, back to boiling lava when it wore off after half a day. The other thing is that often when you block a type of receptor in the body to stop it working, it just makes more. So, you’re wide open for an avalanche if the dose wears off or you stop it. It took 2 weeks of hell coming off them until my body seemed to regulate itself with the coated Pred, and Gaviscon advance (lower sodium, higher potassium better with Pred). You could offer to pay a private prescription for the coated Pred with the deal being that of it works, you back to NHS prescription. My GP wavered a bit on cost but I said the cost of Pred + PPI was the same as coated Pred alone if I bought my own Gaviscon nightcap.

Thanks for explaining. So you just take the enteric coated Pred with the Gaviscon advance, and that's all you need? Did anything happen to your gastric pathway in the two weeks it took for your stomach acid to regulate itself? No damage?

I have no idea whether I sustained any lasting damage because it was never investigated, but it does seem to have settled down. The only time I had a rematch was during a Covid like illness in March. Once settled after the coupe of weeks, all I needed was coated Pred and Gaviscon at night. However, I had been on Omperazole, the PPI type, for a week or so, so I just stopped and switched to the H2 type. If I had been on it for longer or a big dose I would have stopped it more slowly to avoid worse rebound. To be honest I was following my own hunch and an educated guess at the time, because I had Omeprazole can do no wrong from docs too, but my GP who knows me well let me say my piece and agreed to my plan. I was ready to fight though and was on EC Pred and Gaviscon from 40mg to under 5mg somewhere. My years of acid reflux prior to GCA has now gone too. You are in a difficult position as I think your problems have been allowed to persist or have been more extreme. It may be that you need to advocate for yourself quite strongly and in writing if another GP won’t help with an obvious fix. Someone has to be taking responsibility for the decision not to prescribe you EC Pred. Saying that the Omperazole should be working so therefore your issues can’t be happening or somehow no other avenue should be explored is very poor. Also, do the hospital docs who did the endoscopy and prescribed the high dose Omperazole even know you are still in trouble?

Nope, they don't know about the recurrence. I tried ringing the endoscopy ward several times, but they never answer their phone. I think they only deal with referrals from other docs, not follow ups from patients. They're pretty busy I suppose.

Do you have the name of the consultant? If so, try the secretary. Have you asked the GP for re-referral? I know it’ll take too long but it would be interesting to know what the GP’s attitude is. If they won’t go against the hospital’s prescribed treatment, they could at least tell them if it isn’t working.

Yes I do, but the only contact number is the rheumatology nurse for that consultant. They're very good if you're lucky enough to get them live on the phone, but often it's just 'leave a message' and I've no-one get back to me from my messages. One of the GP's rang rheumatology himself for me at the beginning of all this- they can ring on a direct line if they're a clinician. But usually thy ask us to do it.

So perhaps some persistent asking why you can’t have e/c (with costs to back you up), what they think the risks will be if you are left in your current state and shouldn’t they perhaps tell the hospital their treatment is far from working.

I'd love to be able to say all that. I'm getting a call back from rheumatology today, hopefully, so I want to ask them about the enteric coated prednisolone if they don't suggest it. I doubt the GP would agree to it unless rheumatology recommended it. Getting breakfast down my neck this morning was tough, and now I feel nauseous. Just hope it stays down. I know straight talking is what is needed now, before something goes disastrously wrong. The GP who told me he couldn't offer me anything further, finished off by saying, 'of course, if you start vomiting blood, or passing blood in your stools, then you must get back in touch because that will require hospital intervention.' Must say that filled me full of confidence. His name is Doctor Regan by the way, just to put it out there!

Good luck, be brave; I know it’s so much easier said than done. You might find they are very reasonable but if not and you’re cornered, asking them questions works better than trying to expound your theories. Questions like, “how do you see this panning out?” , “ok, “could you explain your reasoning behind..” , “who will have responsibility for ....”. Remember above all, you’re not silly and your intelligence isn’t affected by which side of their desk you sit.

I keep telling myself that. But sometimes GP's have a way of speaking to you that says 'I'm the doctor. I know better than you.' I spoke to the rheumy nurse today, and she's writing to my GP to recommend the enteric coated tablets, but says it's up to the practice if they're prepared to do this. I'll be speaking to the GP this evening to bring her up to date, and ask some of those questions you mention to put her on the spot. Thanks for all your help.

I always emphasised that the info I was providing the GP that came from here was proper solid info as the HU forum was run by the UK charity PMRGCAuk and people always referred to proper peer reviewed papers etc and it wasn't just stuff I'd randomly found on the internet posted by someone's mad Aunty Doris on FB. When I wanted to start the DSNS method I printed off a spreadsheet from here and took it with me and he said that he'd never heard of the method before but that it made sense. Since then he's said that I've "educated him". Good luck anyway. It's not easy but it will be worthwhile in the end.

You're lucky to have him. Thanks Highlandtiger.

It took me quite a while to get him trained! 😉

That's surely a bit back to front as if they gave you enteric coated you presumably wouldn't need the PPI....?

Like tangocharlie Omeprazole gave me the most awful gastric symptoms - everything it was supposed to prevent. First GP didn't put me on it. No gastric symptoms. Second one did "just in case". Immediately felt awful and did so the whole time I was on it. Then I was put on enteric coated and no PPI and the gastric symptoms went away immediately.

That may not be the case for you but it might be worth a try? Like SnazzyD enteric coated pred was a game changer for me too.

I'll ask again. I'm getting desperate now.

Different doctor

My practice has several GP's. They discuss their patients between them, and generally follow the group's advice. Much of a muchness. There are a couple of other practices in the area, but they're very small ones, and I haven't done any research.

Small practices can be fine and sometimes more personal. I know you don’t have the luxury of lots of research. Perhaps get a bit heavier as said, hopefully get a prescription for EC Pred and then look to jump ship. It is really horrible having to stand up for yourself but sometimes you have to, to save your own skin. The basis of the complaint is refusing to try uncomplicated alternatives to avoid lasting damage. It isn’t even a whacky theory for goodness sake.

It's clearly all about money. But I reckon the cost of putting everything right once the horse has bolted is likely to be more.

Indeed! Here are prices for different Preds . enteric is further down. I hope they will open

bnf.nice.org.uk/medicinal-f...

The list for Omperazole. It’s quite expensive.

bnf.nice.org.uk/medicinal-f...

The Omeprazole prices really shock me. Per tablet too. Yet the GP's are keen to prescribe them.

Maybe others on here know how to wean off Omneprazole without making things worse and can advise you? Sorry no experience myself

No worries. The responses on this forum remind me how caring people are.

This looks interesting. I Googled weaning off PPIs, there may be others

practiceupdate.com/content/...

Thanks Tangocharlie. It's very scary reading. Make me think if only I knew all this before. Seems getting out of the vicious circle will be hard work and painful.

Did you ask for the enteric coated ones or did they offer them to you?

The first GP gave me the enteric coated ones. I didn't even know that there were different types at the time (I was a bit slow to find this forum...) so I just thought they were the norm. The second GP I saw gave me uncoated ones and omeprazole. Then I felt dreadful. I had to ask him to give me the coated ones again and to drop the omeprazole. He wasn't keen initially and took a bit of persuasion but I'd read here that although the coated ones are more expensive if you take away the cost of omeprazole the total cost isn't much more expensive if at all. I'm not particularly good at swallowing pills and find the coated ones much easier to swallow than the uncoated ones. I told him that too. Good luck.

Thanks so much. I'll try to do the same, and hope they listen.

I had to ask for mine, it was a bit of a fight. Picked up my prescription, went back in to see doctor as he hadn't prescribed the gastro resistant ones as I'd asked for, he sat me down with himself and another doctor and started to say why I didn't need them, but I stood my ground (with the help of this forum may I add) and upshot was I changed my doctor as wasn't going to go through a fight again. I also had to push for a dexa scan! It was terrible. I'm now in a much smaller practice with a nice gp. I've had recent issues with the pharmacy there in obtaining more 1mg gastro resistant preds, but that's now resolved. Good luck with your battle.

Last night my GP agreed to change my prescription over to the enteric coated Prednisolone! Won't get them until next week, as I have to wait for the chemist delivery, but I just hope there's no problem in getting hold of them. Been in pain this morning and after lunch, even though I haven't had anything aggravating to eat. Thanks for the good luck. Hope things get better soon.

Sounds awful, the GP should at least be offering you enteric coated/gastric resistant if you are not already on that version.

I have asked, but they keep saying not necessary so long as I'm taking the PPI's. But they need to be reconsidering now, because the PPI's are no longer effective.

Hi Strawclutching, Acid Reflux is awful! I feel for you.. I’ve been taking Slippery Elm powder, you mix it with water and drink it. It coats everything and helps protect against acid, you can take it 3 times a day.. and it doesn’t have any bad side effects! It’s been amazing, my husband uses it too, it has nearly completely stopped his acid reflux that he used to have, and he was in a bad way with coughing from The acid constantly. You buy it from a Health Food Shop. All the best with your recovery ..

Thanks so much. I'll certainly think about that. Great help.

Alchemy8
Alchemy8 in reply to Living001

Me too! But I take Marshmallow Root Powder which works similarly and very well. I take it in water before each meal. Also my doctor has given me enteric without question. Brilliant!

Great! My GP has just agreed to change me over too, so I just hope they work for me.

So pleased for you - you have been through the mill.

Before my PMR diagnosis I used to suffer terribly with reflux, high levels of acidity and got though endless supplies of Rennie and Gaviscon. Tried everything. One thing that helped me was to eat an apple and for whatever reason that seemed to settle things down. Then along came PMR and omiprazole as part of my prescription which I had never heard of. In my case it’s worked well, very well. I rarely get any reflux and my stomach is more stable than it’s been in years. My dilemma now is that my PMR is in remission and I’m down to 1mg pred but still taking the omiprazole. I know if I come off it I’ll be back to the bad old reflux days. We are all so different yet battling the same what to do for best questions. Not spoken to my GP about it yet as I keep putting off the ‘what to do about the omiprazole question’. Good luck as you address your dilemmas.

I've been reading lots of studies about the over prescribing of PPI's I wish I'd known about before. What dose of Omeprazole are you on? I was started on the highest 40 mgs dose twice a day, when I believe I could have managed on the lower dose. Now, of course, I can't see how I would come off it, if at all. The side effects long term are very worrying and something clinicians should be considering first of all.

Hi strawclutching I've been on 20mg once a day throughout my PMR journey which is two years since diagnosis. I do worry about the long term effects but my view which I know you will know very well, is that if I return to a constant state of reflux, acidity, pain and lack of sleep etc that is far more destructive. However I do understand that for you the Omeprazole hasn't sorted the problem out.

Omeprazole was working well at the beginning until my GP told me to stop the evening dose when I started to reduce the Pred. Then I had a huge rebound of acid which has been ongoing for nearly 3 weeks despite going back onto the two doses. Nightmare.

Hi strawclutching. All the info you've been given so far is from people with much more knowledge and experience than myself, but thought I might mention one or two things just for consideration. I've been on pred for 18mths (along with Alendronic acid for osteoporosis, a beta blocker and a statin), and so far managed to avoid PPI's. You probably already know some or all of what I'm going to say, so forgive me if you do. I believe I've' managed to avoid any kind of serious acid reflux (even though it threatened to emerge from time to time) by doing certain things to minimise it happening.

- I always take pred after food. (As youve heard, many people can't do that because of timing, and so take it with some natural yogurt instead)......but for all of us......that means simply, not taking it on an empty stomach.

- I eat at regular intervals (I found that leaving large amounts of time between eating, so I was beginning to feel hungry, caused acid production and would bring about the feeling of acid reflux......eating regularly seemed to prevent this happening)

- I discovered that eating certain foods (not necessarily on the 'foods to avoid' list, but that I personally seemed to be sensitive to) would or could bring about the beginnings of acid reflux. Foods that I have to avoid include some obvious things like spicy foods....curries, etc, onions, foods high in fat content like crisps, pastry (one of the worst for me) pizzas, chips, fried foods of any sort, cheese, milk chocolate, any kind of alcohol (I don't drink anymore) but also more surprising things like bananas, grapes, tomatoes, pineapple, kiwi fruit, prawns. I now eat lots of fresh fruit and vegetables, wholegrains, protein and drink lots of water. I also have natural yogurt every morning on my fruit and seeds. All of this has helped me so far. I know things may change in the future, but for now, it's working.

When I'm mindful of what I'm eating I definitely have a much better digestive outcome, but I realise that your digestive issues are much more complex than mine. I just thought that anything that might contribute to minimising your discomfort might be of help to you though. I hope you get this problem sorted.....life can be miserable when you're suffering like this and my heart goes out to you.

Thanks for letting me know what works for you Kendrew. I'm still experimenting cautiously with individual foods. Bananas were initially calming for my reflux, but now they tend to make it worse. Maybe something to do with how ripe they are, etc. or could be I'm at a worse state internally than before. I also have another complication of insulin dependent diabetes, and my blood sugars since starting Pred have been unpredictable, so eating more frequently would further complicate things for me. I've always been a healthy eater, however now I'm feeling quite nauseous when faced with anything, so my choices tend to be something simple like soup accompanied by bread to keep up the calories. I can't afford to lose any more weight, that's why healing the stomach issue is my main concern. Just wish the clinicians involved would recognise how important this is.

I definitely think all the advice to continue expressing that nothing is actually working for you, is very good advice. It can be very hard to contradict medical professionals though, but I think in your case....if only for your own well being.... you perhaps need to really force the issue in order to affect any change. I truly wish you well and hope you don't have to be in so much discomfort for much longer.

Thanks Kendrew. I'm speaking to a GP this evening, so will do my best at being forceful.

Hi Strawclutching - I'd just like to reply along the same vein as Kendrew !

I'm no expert so can only tell you what helped me. I have been free of PMR & pred now for over 18 months (I still dip into this forum to see how everyone is getting on!), but when I took alendronic acid (when I was taking pred) I became very 'acidy' and uncomfortable, so I researched the most alkaline food/drink I could take to counteract the acidity and it turned out to be collards and kale - cooked and drained. So I started making a smoothie every day with blanched kale from the allotment and the acidy feeling went away. Further research showed that kale & collards are extremely high in calcium so I have continued with a green smoothie every day for the past 2 years now. We can't buy collards in the UK so we've started growing them at the allotment - it's a sea of kale and collards there now!

I know that "feeling acidy" is nothing compared with what you're suffering at the moment, but kale/collards may help a little. I hope your GP phone appointment went well today and you are getting further investigations as a matter of urgency.

My GP agreed to the enteric coated Pred just last evening. Won't get them until next week as I have to wait for the chemist delivery...unless I crawl there, but maybe they'll work. At least there's a chance. I'll look into the collards and kale thing. Thanks for the info.

That’s great news. Well done!

You need gastroenterologist evaluation asap. They should do endoscopy, manometry and swallow eval. Reflux can cause serious problems in addition to pain. I had esophagitis grade c, I have esophageal dysmotility, dysphagia, hiatel hernia. Omoeprazole doesn't help everyone. Dexilant is what I've taken for nearly 2 years. It's very expensive but Takeda Pharma has patient helping hand program. I also use gaviscon occasionally. The reflux can cause esophageal dysmotility & dysphagia (swallowing difficulty) so please get treatment. It can be treated. You do not have to suffer but may need special diet & lifelong medicine. Best of luck! BTW, if you are on meds for osteoporosis should not take oral. I do i.v. Boniva every 3 months.

Thanks for that information Spanky. So many drugs I hadn't heard of and it seems the ones used most widely, and more commonly known are the 'go to' ones for most clinicians regardless of the individual patient's issues of concern. It's not right.

Hi Strawclutching,

I feel for you.

I’ve just started to suffer with acid reflux. I went to A&E two weeks ago with chest, jaw and left arm pain. After thorough testing I was assured it wasn’t my heart but acid reflux! They said in severe cases it can cause these symptoms. I was on the maximum dose of Lansoprazole so they changed it to Esomeprazole, I’m following a strict diet and it is easing but still lurks. I too feel fed up with knowing what to eat but need to get it more under control. I live on Gaviscon at the moment for the heartburn. My GP gave me a list of foods to avoid. Nothing fried or spicy and no caffeine or citrus, nothing with skins on - tomatoes, peppers grapes etc. It is boring but helping.

I was diagnosed with a very small hiatus hernia three years ago but never had any symptoms. They’re saying it must have worsened and perhaps need the camera down again.....yuk!

You need to see your GP for a referral if it’s that bad.

Thanks for that info Telian. I did try Esomeprazole but found it didn't help. I'm already avoiding all of those things you mention, and they used to be my favourites. I had the camera down a few weeks ago, but my symptoms weren't nearly as bad as they are now. I'm fed up to, especially since my GP's are not listening.

I took pred after large portion of porridge to help nausea and also drank mint tea. GP has given me pantoprazole as omeprazole didn’t agree with me.

Thanks for that Daffodilia.

I am prescribed Pantoprasole for acid reflux and Zofran for the nausea. Works for me. I am so sorry that you're suffering so much. I can relate, it's awful. I'm on Prednisone. From what I read, prednisolone is preferred for patients with liver problems. But other than that, they work about the same - after prednisone is processed through the liver.

Acid reflux causes my asthma. Just thought I'd add that info in case it might help since I don't know why you take prednisolone. I take prednisone for severe allergies.

Another thing: I don't take different meds together unless I know how my body reacts to them. If you're taking prednisolone at the same time as omeprazole, you might try taking them at least an hour apart.

Wishing you better health and relief from your current suffering.

The directions for taking Omeprazole and Pred are just what you say. Omeprazole one hour before eating, and the Pred straight after eating, so I've always stuck by those rules. I take Prednisolone for Giant Cell Arteritis, to bring down the inflammation in my arteries, and it's good for doing that, but so tough on the body. I have a 70 year old friend who takes Pred for chest infections, but doesn't need any PPI to go with it. He also drinks a bottle of wine a day and eats whatever he likes. We're all different I guess.

I had reflux problems before pmr. The 'prazoles' created more problems. Having started with pred, there was a change in GP and the combination of enteric coated and yogurt made all the difference. I should add, my surgery is a small rural practice and does its own dispensing. The more I hear of large surgeries, the more I despair. Have to say my problems were nothing like as bad as yours. I wish you well.

Thanks Herdysheep. I think you're right about large surgeries. I was with the same small practice most of my life until it was taken over by a larger concern and much posher building and it's never been the same since. My old family doctor would be turning in his grave. I'm hoping to be offered the enteric coated form of Pred today. Just waiting for a phone call. If not, I'm going to push for it.

I started suffering from acid reflux earlier this year after over 4 years of pred and omeprazole. I was on the point of asking the doc. to increase the omeprazole when I read on this forum that it could be part of the problem. I started cutting back on omeprazole once every few days then reducing faster until I was taking it every other day until finally stopped altogether. I get occasional symptoms, but much better than I was and I am careful not to eat anything less than 3 hours before bedtime.

Were you on 20mgs or 40 mgs of Omeprazole? I'm on 40mgs twice a day. Just wondering how many mgs you would start cutting down and whether mornings or evenings. I can't consider doing that yet, but would like the option if I get this gastric inflammation healed eventually.

I was on 20mg and only taking it in the evening with my pred and food, so nothing like your quantity. Thanks to advice on this forum I have been able to reduce pred so I am now down to 2 and a half mg daily. I do hope you can get help with your symptoms soon.

Thanks dolphin39, me too!

I had a severe attack of acid reflux in June 2011. It seemed to come out of nowhere. By July I was reading up on every possible article and study I could find to try to understand why I was having this. All roads pointed to Omeprazole or similar and every study on long term use of it pointed up knock on effects that would likley make my health worse in the long term. I went to see a gastroenterologist that July and he perfomred the endoscopy and all tests. Nothing bad was found so he proclaimed that I have GERD, a fancy moniker for acid reflux. His only remedy: Omeprasole!

I became determined to get better as naturally as possible.

Look up Acid Reflux diets on your search engines - study these and pick out one to start with, to follow very carefully and with self discipline.

For me the start was to reduce intake of all bread, cakes, biscuits, puddings. Sugar was greatly reduced. No alcohol or fizzy drinks. No coffee or regular tea, only herbal teas. Up went the consumption of grilled fish and green leafy vegetables. Yes it was hard. Over several months the symptoms reduced, I lost weight and by the early autumn I was back to normal and felt great.

I greatly recommend you try Mastic from Holland and Barrett, and eventually wean yourself off Omeprazole if you can. Acid reflux is horrible, it;s like torture. I wish you all well again and happy.

Did you get off the Omeprazole eventually, and how gradually did you do it? I've already changed my diet and cut out a lot of the aggravating foods, and especially no carbonated drinks. This hasn't been difficult mainly because I have a lot of nausea, so food is not uppermost in my mind at the moment. I couldn't give up bread, as it is my 'go to' staple and doesn't seem to bother me. The biscuits and cakes do bother me, even the ones I make myself which is so disappointing. I've also turned to fish rather than meat, and nuts too for nutrients I may be deprived of. Unfortunately, Omeprazole seems to be the first point of call for most clinicians without considering the future issues with it.

This sounds all too familiar! I suffer from reflux due to a weak stomach valve. When I started on Pred I was given pantoprazole. It didn't work so my GP tried omeprazole, lansoprazole and every ppi he could think of. None worked for me. I then asked if I could take Ranitidine (zantac) and that made a great difference. Then they became unavailable and even though there are other H2 meds I wasn't offered them.

After an endoscopy my gastroenterologist diagnosed gastritis and had me take 20ml of Peptac four times a day which helped. I gag at taking Peptac or gaviscon but I managed for a couple of weeks and the gastritis cleared up.

Now I have three dessert spoons of Greek live yoghurt with my Pred which I have early morning. That really made the difference. I would suggest you try it. I can have gastro resistant prednisolone as my Rheumy asked my GP to prescribe it. I am on 5mg a day. However I found that the coated tablets didn't seem as effective for me as the normal Pred.

Every now and then my tummy has a flare up then it's no coffee or tea for me and back on the Peptac until it eases up. I don't want to try PPIs any more and I have a very small to stash of Ranitidine which my Rheumy told me to hang on to in case I get a really bad tum. Haven't needed them though as the yoghurt seems to do the trick for me.

It can become very disheartening to have to keep balancing drugs to help the side effects of the Pred which we really need to take to control the inflammation. Hope you are able to get some help soon 🤗

strawclutching
strawclutching in reply to S4ndy

Thanks for sharing your story S4ndy. I've been taking Peptac as well as the Omeprazole and probably take too much of it. Was it easy to leave the Ranitidine behind or did you have to wean yourself off it? I'm trying the yogurt with my Pred - Just started this morning so I'll see how it goes. I take it you went back onto the uncoated Pred when the enteric one wasn't working so well? Did the enteric coated one help your reflux though?

S4ndy
S4ndy in reply to strawclutching

No probs getting off Ranitidine but getting off pantoprazole was worse but luckily you can take them both. No difference in reflux between the coated and uncoated Pred for me.

strawclutching
strawclutching in reply to S4ndy

Oh heck. And here's me thinking it had to be better. But if it's no worse, maybe worth a try.

I was on omeprazole for 4 yrs for acid reflux because of steroids I asked my Rheumatologist to prescribe Gastric resistance steroids the coated ones

Have been on these for a year now and omeprazole discontinued when these were prescribed

I no longer have any reflux and only after taking the coated steroids for a few days I had no more reflux problem

I hope this may help X

Hi Littlefish. Did you stop the Omeprazole cold turkey straight away or reduce gradually? Just wondered if in the days following the start of the coated Pred before the reflux went away you were tempted to go back on them?

I stopped the omeprazole straight away as the rheumatologist recommended and started the coated steroids I have had no trouble since I hope you get sorted out keep pushing for the coated steroids don’t give up

Hope you feel better soon X

Thanks Littlefish30.

I have been having the same issue. I drink aloe vera juice and when I drink it daily it helps a lot. It really helps when I drink it in the evening. You can buy it in most drug stores and some grocery stores. Good Luck

Thanks so much Linny.

See if you can get a prescription for Dexilant. Works for me when others failed.

Thanks for that. I'm worried about swapping to something that may be worse or just as bad. I tried esomeprazole which was meant to be stronger than Omeprazole but turned out to be less effective. I'll keep Dexilant under my hat for now.

I don't want to frighten you but - Get to see a specialist asap. I just got this message yesterday: One of my friends who doesn't have a family doctor any more, only a nurse practitioner, thought she had acid reflux and told the NP that. The treatment didn't work. She wanted to be referred to a specialist but the NP didn't think she needed it. All that, plus referral to some doctor who wasn't it turns out in the right specialty, occurred through phone appointments - no one saw her, no one gave her a physical examination. Time elapsed, symptoms got worse, now one of her vocal cords is paralyzed and she is being investigated for a tumour having finally seen a specialist, received an MRI and now awaiting biopsy. Things are going to move quickly now, but I hope that NP gets some severe disciplining. She treated my friend very disrespecfully. So, see a specialist, more than likely to put your mind at ease and get a better treatment for your issues. 🤗

God, that's awful. What happened to her family doctor? I've had many appointments with Nurse Practitioners since the pandemic started who didn't have much of a clue and telephone referral appointments are a farce. Can she speak? I'm having a telephone consultation this evening with a GP and plan to tell her how serious my condition could be if left alone - that's if it's not serious already - which it certainly feels like it is. Thanks for the advice. I'm being super careful with what I'm eating, Propping myself up in bed, etc. Still not sleeping much though.

I don't know for sure if she can speak, I think she can. She sent me lengthy FB messages to tell me what is going on. She complained about her voice getting very hoarse.

There's been a terrible shortage of family doctors in Nova Scotia for years. For some reason the politicians who make decisions didn't seem to notice that, at the same time as boomers started to get decrepit, their doctors of the same age would be retiring in droves, and actually cut back on the number of physicians they were training just in time to create a crisis. I only have a doctor because I cried when the clinic told me I was no longer a patient there (after nearly forty years) as my doctor had retired. This is when I was suffering from undiagnosed PMR. At least two of my friends, both only a few years younger than I am, now have been put into the hands of an NP, not a GP. The practice where I've gone for years doesn't, as far as I know, use NPs this way, but I note there are not as many doctors available as used to be and a couple of them must be very old by now.

That sounds dire. Looks like you'll have to rely on google to diagnose yourself. That's what I did after being turned away twice in three weeks from my GP's to take paracetamol at home when I had definite symptoms of GCA and PMR.

well I am lucky I have a GP, although she's moving and we are being taken on by a new doctor (from the UK with an unusual name, look like it's sort of Indian but I don't think it is,from some part of that world, no doubt from the old British Empire! I haven't met him yet). To be honest I think even in my direst straits I wouldn't have accepted being put in the care of an NP. A previous, rather young, doctor, whom I suspected of having baby brain as she was very pregnant, didn't diagnose me and I felt viewed me as a hypochondriac old woman. So as we know, not all GPs are great either. But I haven't heard much satisfaction expressed regarding NPs here. The government should not view them as discounted general practitioners. Their expertise lies elewhere and they would be employed more usefully there. However I did plug my symptoms into Google months earlier, and came up with polymyalgia. Except when I saw it was treated with steroids I thought I couldn't possibly have anything that serious and promptly forgot all about it. I had not yet reached the point where I thought I was dying....

..And then you did? I think I'm dying every day from the medication. They say chemo is really bad to get through, and I wouldn't want to compare PMR or GCA to cancer, but the treatment for some is worse than the illness.

I got my new doctor because I was standing at the duty doctor's station at the practice where I'd gone most of my adult life, being told I wasn't a patient there any more and I should go to a drop-in clinic. When they started giving me directions to the nearest clinic one half of my brain is thinking, well, there's one much closer to my home, but tears started to pour down my face, I wasn't sobbing so it wasn't as dramatic as that, only the person in front of me knew, and I said I felt like I'd fallen off a cliff, and how much weight I'd lost, and the next thing I know she's telling me to wait a minute. And she got one of the doctors who officially wasn't taking new patients (none of them were at this time) to see me. That doctor diagnosed me almost instantly, but ran the tests again and then put me on the one week pred trial. And yes, because of the weight loss on top of what was by then disabling pain, I was afraid I was dying. For me pred worked its miracle. and have had no side effects which made me *feel* worse. I do not take any other prescription medications.

Glad you got diagnosed in the end. Tears can be useful sometimes.

I share much of your story...stomach problems and nausea started when I was on high dose prednisone - no enteric coated pred in Canada. I was prescribed 40 mg Pantoprazole (Tecta) when I first started prednisone (GCA June 2019) and the tummy upsets started with a vengeance. I was hospitalized for 3 days this past July (2020) with what was diagnosed as infectious colitis; since then it has been a daily battle - I never know what will set my tummy troubles off. It's as if I'm walking on a tightrope every day. Endoscopy while in hospital showed no ulcer or damage to my stomach lining.I envy the HU members who have written that a bit of lemon in water or yogurt will help...not in my case. We bought an adjustable bed after my hospitalization and being able to sleep on an incline has helped somewhat. I am eating small meals/snacks throughout the day, avoiding anything acidic, fatty, and like Kendrew, cannot have bananas (which I thought was bland) or grapes..can't even think of pineapple or kiwi fruit. I am not eating or drinking anything cold, nor raw (ie vegetables, salads)...pretty limited diet for someone who was a very conscious of a well balanced diet with good food choices.

My GP suggested taking Gaviscon during the day when the pain (not so much acid) gets bad and it does help for awhile...then nausea and pain start again. Last night I took a Pepcid at bedtime (GP's suggestion ) and after my morning Tecta and oatmeal breakfast, and toast snack mid morning, I'm ok - so far. Will see what lunch (vegetable broth) will bring. Maybe that's the solution for awhile until everything calms down.

I'm almost at 3mg (tapering from 3.5 DSNS method), and am on Tocilizumab bi-weekly injections.

I will try the Slippery Elm powder as suggested by Living...and ask Santa for better days.

I was able to take in a lot of information from all the posts in reply to Strawcluching ...so thank you to all.

What a nightmare you've had. Seems I could be on a long road with no end. I just raised the head of my mattress last night and managed to get about three hours sleep, which is the best I've had in weeks. It was still not that comfortable though. I've ordered some slippery elm powder so will see how that works. It contains lots of vitamins and minerals too, which is an alternative to taking supplements which cause me tummy problems I've also ordered Gaviscon advanced . Tonight I tried a bit of cod but it was coloured with circumin and it set me off a bit. Where do you think the infectious colitis came from? The reflux?

If I were a betting person, I'd say it was from the reflux. Nothing else - I was checked for food poisoning but that was negative...nothing different in my diet or lifestyle. And I truly believe high dose prednisone is what started this stomach nightmare...to go along with all the other negative side effects I've had. But we have no choice, right? Best of luck to you...to us both!

Thanks GratefulBailey. Good luck to you too.

Acid Cider Vinegar for acid reflux and many other problems. I take 1st thing in the morning, warm water with cider vinegar, lemon,dash of ginger & some honey. Dish the other Omeprazole. good luck

Thank you Regan.

Bennijax
Bennijax in reply to regan2

I forget to say, this I do too since 2011 when I had the awful ARf.

Fresh ginger cut up and into my mug plus boiled water, + 1 teaspoon apple cider vinegar (with the Mother in it),+ a teaspoon of Manukah honey. Have this since 2011 every morning on waking.

Thanks Bennijax. But what is the Mother in it?

Here’s what I just found on Google- quite a lot!

Showing results for what is the "mother" in apple cider vinegar?Search instead for what is the "mother" in apple cuder vinegar?

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The "mother" refers to the combination of yeast and bacteria formed during fermentation. If you look at an apple cider vinegar bottle, you can see strands of the "mother" floating around.23 Aug 2018

Can you eat the mother in apple cider vinegar?

What is the difference between apple cider vinegar and apple cider vinegar with mother?

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5 benefits of apple cider vinegar with 'The Mother' | Holland ...hollandandbarrett.com › supplements › 5-benefits...

What is 'The Mother' in Apple Cider Vinegar? You can see Mother as a cloudy substance floating in some bottles of vinegar. The Mother is believed to be rich in ...

6 Proven Benefits of Apple Cider Vinegar - Healthlinehealthline.com › nutrition › 6-proven-health-bene...

4 Mar 2020 — Cider vinegars are 5–6% acetic acid ( 2 , 3). Organic, unfiltered apple cider vinegar also contains a substance called mother, which consists of strands of proteins, enzymes, and friendly bacteria that give the product a murky appearance.

Apple Cider Vinegar: Benefits, Side Effects, Dosage, and ...verywellhealth.com › ... › Holistic Health

Known as "mother of vinegar" or simply "mother," this sediment consists mainly of acetic acid bacteria. Some say that unfiltered options are better because of this, ...

What is the “Mother” in Apple Cider Vinegar? - Enzymedicaenzymedica.com › blogs › ingredient-science › what-is-th...

4 May 2018 — Apple cider vinegar is made through a two-step process. First, yeast is added to apple juice to break down the sugars and turn them into alcohol.

Benefits of Apple Cider Vinegar with "The Mother" - DocOnlinedoconline.com › blog › benefits-of-apple-cider-vi...

12 Dec 2019 — The unfiltered and unrefined vinegar with cloudy and murky appearance is called apple cider vinegar with "mother". It is used for drinking ...

Apple Cider Vinegar: Benefits, Uses, Risks, and Dosagewebmd.com › ... › Reference

3 Oct 2019 — Some people say the “mother,” the cloud of yeast and bacteria you might see in a bottle of apple cider vinegar, is what makes it healthy.

What is Apple Cider Vinegar with The Mother? Wellness Mamawellnessmama.com › Blog › Natural Home

28 Jun 2016 — Apple cider vinegar with the mother is simply unrefined, unpasteurized and unfiltered ACV. The “mother” is a colony of beneficial bacteria, similar ...

What to know about drinking apple cider vinegar - Insiderinsider.com › Health

5 Jun 2018 — She explains that "the mother" simply means strands of protein (which contain enzymes and beneficial bacteria) in organic apple cider vinegar ...

Apple cider vinegar detox: Drink, diet, and side effectsmedicalnewstoday.com › articles

15 Feb 2018 — The best way to do an ACV detox is to use raw, unfiltered apple cider vinegar that still contains “the mother.” The “mother” contains some ...

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