I have taken Lansoprazole for a good 4 years for GERD Esophagitis, Grade A Gastritis and more recently Peptic Ulcers due to Aspirin. Aspirin was removed, and I was put on Clopidogrel, but this caused another Peptic Ulcer. My dose of Lansoprazole was increased and very quickly I became intolerant of it, very seriously so.
I was then put on Ranitidine and had an anaphylaxis on it and it was removed by the hospital, and they put me back on Lansoprazole, again, intolerance severely so occurred again.
I was then tried on Pantoprazole and another severe reaction to it.
Now with my medications I need a stomach protector, more so now because of the ulcers I have had.
I have also had confirmed today that I have Osteoporosis in the hips, which is concerning given the connection of long term use of PPI with this.
I have been put back on Lansoprazole, but lower dose and only 1 x day, but I just don't feel right on this, strange feelings of throat constriction, breathlessness.
I am seeing my Rhuematologist on Monday so will talk it through with her, but I am fast running out of options here.
Anyone else struggle with PPI treatment, what were your experiences, and indeed how do you wrestle with the bad press on them long term, over current immediate needs? Is it all out balancing up the situation?
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LupusKaren
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Oh dear what a worry for you given that you need stomach protection. I can’t advise as I do tolerate max dose of Rantidine well. But I have exaxtly the same issue will PPIs as you - they make me feel horrible. I hope others here have more suggestions.x
I really feel for you. For me these drugs literally enable me to eat. I have esophageal dysmotility and the choking sensation in the throat from the acid. I can’t manage on Ranitidine and am now back to daily Aciphex. This may sound like a ridiculous suggestion, but I remember years ago, when they were trying to decrease my medication, my GI doctor telling me to take Maalox before bed. Could you ask your doctor if that would help protect your stomach? Just a thought. That is so hard that you cannot tolerate these medications that you need. K
I have found great relief from paying strict attention to what I eat. You may find that some of your favourite foods are actually contributing to your stomach issues, acidity wise.
Much to my medical teams displeasure I decided I wanted to wean myself off of ppis. I was strongly advised against it. But together with dietary changes I am managing to cope as least as well as I was when I was on ppis. I also have a hiatus hernia which doesn't exactly help with digestion. If you cannot do without then I would be the first to say keep on with the medication as prescribed. But you may want to read up on possible other approaches that may be of use.
I find it's best to eat a good while before sleeping, and I do prop myself up with pillows.
I have GERD and for this PPIs didnt do anything. The only thing that worked for me is 10 mg of Baclofen 4 times a day (three times a day and then before sleep). If I still feel some acid then i take a quarter if spoon of baking soda with water two times a day. I have been on baclofen for seven years already...
I also have oesopogitis &gastritis I was advised by the gastrologist to take Gaviscon too - tbh when I had a terrible flare up I didn’t eat for a few days which sounds awful but everything I ate was too painful so I stuck to lots of milk- I’ve learnt the hard way to avoid tomatoes blimey!! And it may be helpful for you to go on YouTube to see what others are eating as there are many in there with it who have lots of ideas too for choosing the right food to eat. I really do feel for you though as it’s so painful bless you. Hope you feel much better soon x
Gosh lupuskaren...am so sorry....and me too: born in the early 1950s....allergic to all PPIs...also have lifelong mouth to exit childhood onset slow transit dysmotility which makes muscle relaxants like Baclofen a no-go for me - all my consultants won’t let me even try them
And am diagnosed with almost every chronic inflammatory upper GI tract condition from the oral stuff & pre barretts esophagitis with gastric metaplasia, to hastroparesis, gastritis with lesions + duodenitis to SIBO (small bowel intestinal bacteria overflow).
and my lower GI has an equivalent collection: am 65, my lupus is infant onset and visceral hyperreactivity & maladsoprtion with hEDS suspected MCAD (mast cell disorder) and am now on EEN (exclusive enteral nutrition made of pre digested amino acids)) due to a rare immune dysfunction + connective tissue disorder related inflammatory enteropathy which has caused my small intestines to stop being able to digest food (intestinal failure)...
And my medics say i’m now “allergic” to PPIs, although my conditions & meds mean i need them
I’ve too have been following developements as science has figured out more & more about the risks/benefits of PPIs (and my other meds) ...basically, i think you’re right: this is about balancing all our treatments including our self help/lifestyle management techniques...and i hope your medics are the better kind who actually are good at collaborating on this balancing...of course outr wonderful fotum also helps me a lot with this balancing
For me, it’s been a nightmare life coping with all this, especially the GI stuff...For 50 years my most effective & least allergy provoking first line of defense had been an anti-inflammatory Low FODMAP high roughage exclusion diet. So i agree with overnighthearingloss...ESPECIALLY freshly prepared (from roots themselves) ginger tea is KEY to managing my stomach & small intestinal conditions
But by the time i hit 50, the side effects of years on nhs prescrip meds for endometriosis .+ chronic spine pain (powerful NSAIDs & opiate analgesics) had had such bad side effects i’d become constantly nauseous with bad “lupus voice” hoarseness. At that point gastroenterology gastroscopy formally diagnosed all my early onset upper GI stuff...and i was put on daily PPI for the first time ongoing ; esomeprazole..+ also the stomach emptying med domperidone...for 6 years these meds really helped alngside the exclusion diet + constantly sipping fresh ginger tea ...but also the PPI side effects got so bad that on year 6 i finally stopped these meds cold-turkey, to my GP’s horror, and phew felt “just better enough” to stay off them via lifestyle & dietary management alone. But boy had i begun to DREAD PPIs and ADORE fresh ginger tea + quality ginger products like gin gins (i use the gin gin chews cut into tiny slivers which i suck, no chewing)
Now, thanks to meds for what’s classed as “moderate” lupus + immunology’s daily antibiotics forever damping down the SIBO + EEN + to gastroenterology prescribing the miraclulous only “non fermentable, insoluble bulking agent” Celevac (methulcellulose .- which helps my disabled intestines to slip any food/stool residue through & out without causing inflammatory & allergic reactions) my chronic mouth to ass GI tract issues are more functional & less disabled than ever before
But recently my spine issues meant i had to be prescribed daily high dose NSAID + PPI (celecoxib 400mg + 1x lanzoprazole) for 10 days which both “helped” but caused such an allergic reaction that my medics have said: you must never take either daily NSAIDs &/or PPIs again
So i’m sort of in your position wondering how i’ll be coping without recourse to PPIs if/when i need them again due to my allergic reaction...and with meds like muscle relaxants, eg baclofen, also contraindicated in my case - but mainly due to muscle relaxing aggravating slow transit dysmotility
Feel a bit basic asking if you’ve tried the sort of dietary regimes + fresh ginger tea + methylcellulose that’ve consistently helped me...cause you’re clearly a v expert patirnt, but, other than TOTAL EMPATHY, that’s my offering in this reply...
Am so glad you posted cause your thread is helping me a lot...but i wish none of us have all this to cope with & i hope you & your medics figure out a more effective way to manage yours
And i’m hoping someone who answers your posts can help me too
Take care & good luck...please keep us posted
XOXOXO Coco
PS sorry for the lonnnng reply, but OMG is this subject close to my heart...and recounting all that does help me keep my head clear on my version of this...+ perhaps others will find something in there that’s useful...
I am a fan of ginger too. I read that you have to cut the ginger chews up. Have you tried the hard ginger candies? Just thinking that would be easier for you. Your insides just do not want to do their job and I hear how that affects your life. 😍 K
yes, ginger is good for me too. I find crystallised ginger a good compromise between sweeties (too mild) and the Gin-gin chews (which seem to work mainly by making your head explode, thus taking your mind off your gut) x
Hi kay! THANKS: that’s exactly how it feels! Like my insides constantly are trying to go on strike...my life 24/7 is helping my medics to help me figure out how to coax these old insides to keep doing their job as best they still can, poor old insides!
Yes, i tried the hard gin gins first but my whole oral cavity & mouth are so severely effected by early onset sjogrens + immunoglobulins G, A & M deficiency (hypogammaglobulinaemia - which debilitates mucous membranes throught the body) + angina bullosa haemorrhagica, that anyth8ng hard or rough in my mouth causes lesiin injuries & inflammation. So i had to switch to gin gin chews, but these are too strong & too gluey so i improvised & found that cutting the, into suckable slivers was PERFECT for me HURRAH
Hope you’re rested & recovered & bouncing back after the stimulation & exertion of your happy hols
My dear youngest sister arrived last week from philly...she comes to stay every 3 years or so..it’s wonderful to have her here...but i’m struggling to “behave’ myself aka pace myself....we have vvvv few visitors & hardly any social life mainly cause of my health...well, for sure, the stimulation & exertion of her stay will mean i’ll need a stretch of R&R after she leaves....but she is WORTH It!!!! I think you onow exactly what i mean
Relax with a porto or ginger chews with your sister. Just had a conversation with my brother, who is not the most empathic person, but does understand medical issues. Imagining your being with your sister and just loving the company! 😍
Thank you everyone, especially you CoCo for your excellent explanation, you really are an expert patient on all things gastrointestinal, so your reply has been particularly helpful, thank you.
For more information, I also have a sliding hiatus hernia. Been tested twice for H-Pylori, negative, and have had hydrogen breath test (SIBO), normal, two rounds of private Esophageal manometry, within normal limits. I do not have symptoms of burning acid reflux, my type has been classed as silent reflux, LPR.
I was controlling this so well with DGL (deglycyrrhizinated licorice), but have had to stop as it is contraindicated with Heparin following my PE in December.
LPR was diagnosed by ENT, visual acid burn on my Larynx. This diagnosis has been dismissed recently by Gastroenterology, it does not exist, I beg to differ
For years I have been following the Jamie Kouffman, dropping acid, which really has helped a lot, gone gluten/dairy free, no red meat at all, ever, no caffeine etc., Bed raised, sleep semi upright with wedge pillows.
I cannot take Betaine HCL or ACV tried both once, never again, I set myself back weeks, despite all the hype it did not work.
I am stuck between a rock and hard place really, my parents both have Barretts, and my grandmother died of esophageal cancer, which is why I know I have to think longer term, and try to find a balance.
I take Gaviscon Advance after every meal, and before bed, but double the dose as instructed by my ENT consultant, and have found highest grade Steens Raw Organic Manuka Honey a life saver for any sore esophagus, expensive, but for me works, it also doubles up as calming my diverticulitis, as it did with the PPI's I cannot tolerate.
CoCo, I cannot tolerate ginger in any form at all unfortunately it really burns both going down, and in my gut, and burns through my small bowel, damn it thwarted at every turn it would seem.
With a recent diagnosis of suspected Gastroparesis, it may mean more medications, so for now I will continue with 1 x day lansoprazole, while I wait for my Endoscopy, dependent on what they find, I guess will dictate where I go from here. I will also just have to put up with the breathlessness and neck constriction, oh and did I mention these damn things cause me Insomnia too, oh yes.
The only 'zole' I have not tried is Omeprazole, anyone care to share experience?
Sorry so long everyone, but this thread might one day help someone else.
Oh gosh...ths is SO FLIPPIN HARD....& ginger is OUT too...am so sorry
I gotta use the “complex” word..cause we just ARE..especially those of us who have such early onset comorbidities, and are over 60...it all adds up, including the aging process
or what it’s worth: It was the colorectal surgeon chief at my univ hospital who recommended celevac (methylcellulose) to me a few years ago...and despite my complexity, i am tolerating it + it’s KEY to my multisystem combined therapies and so far especially to keeping my disabled GI tract remaining functional...the fact it is totally hypoallergenic helps A LOT i’m sure... maybe ask your medics about it here is a link to the official info on the NHS recognised & endorsed patient info website:
Also, i forget: have you been investigated for SIBO (small intestine bacteria overflow)?
And have you been prescribed domperidone for your gastroparesis? Domperidone did help my gastroparesis a lot alongside esomeprazole, but taking it long term set my other stuff off
Thank you CoCo, yes I have been investigated for SIBO, but do concede I should perhaps get tested again. I do not know what will happen regards Gastroparesis, as only got told on Tuesday, and await endoscopy. I will pop over to your link, thank you, and I will mention Celevac (methylcellulose) to my consultant, and to my Rhuemy when I see her on Monday.
Hello to everyone I have read all your post with great interest as usual Coco you are so knowledgeable thank you.
It was only this week I have seen my gastroenterologist who has taken me off the PPI at present due to my calcium deficiency and osteoporosis I was on aspirin myself but they have taken me off it and put me on clopidogrel which is supposed to be kinder to the stomach but I have been diagnosed with Dysmotility and intra oesophageal reflux and also Pseudo sacculation and slow transit after a barium swallow and follow through
wish you everyone the very best not sure if there's any clear-cut answer to any of these problems
I was also diagnosed with moderate gastritis
I have been put on resolor as I am not able to take domperidone due to heart problems and it seems to keep me regular !
Sunshine — you have really highlighted how complicated this all gets, particularly in autoimmune patients who are intolerant of many medications and also have other issues that make standard medications unwise. It sounds like you are coping with some tough GI issues. Can I ask how the resolor is working for you? K
Hi well I think it's working okay at the moment I have read sometimes your body just gets used to it but taking it one day at a time. Tried to do without it a few weeks ago and within three days really felt quite poorly the gastroenterologist said that it's not really a cure and is hoping that better things will be out there in the future 🙏🏽here's hoping 🌻🌻🌻
As I mentioned earlier, i weaned myself from ppis. I have found that if I eat a large quantity of bread or flour products I get a massive acid attack at bedtime. I dont eat gluten free, but if i get an overwhelming urge for bread i try to buy an organic loaf, and use it sparingly.
Sometimes I can deal with the acid by essentially sleeping in an almost sitting position. Or at least falling asleep that way. For whatever reason, if I slip down after I am asleep I can often then sleep ok. Not always though.
If the acid remains and stops me sleeping I find Aloe Vera is sometimes helpful, or Andrews. Sometimes though I just have to get up and stay upright until I know I am about to fall asleep again.
I also veer away from cows milk most of the time as I have found dairy is also often a trigger for me, and sugar. I have got used to almond milk in my tea now. But it doesn't work well with coffee. It always seems to curdle in coffee. But again I can manage dairy in small amounts.
An extra thing I have noted is that by following these patterns my constantly blocked sinuses of old are less of a problem. And regular sore throats are less.
Thought I would update on this, very interesting. I had a upper Endoscopy last week, where EoE was diagnosed and gastritis, biopsies taken, these occurring whilst on H2 Ranitidine. Afterwards a long chat ensued with a Senior Registrar, and he said has anyone ever talked to you about low stomach acid ( hypochlorhydria), I said no, but I was aware of it, and the problems that can occur. He gave me a tip personal to my medical needs, so I will not share, but I have to say, what an improvement in my digestion.
So if you do one thing today, and have/are taking PPI for a long time, look up hypochlorhydria, and have a discussion with your appropriate medics if you think appropriate.
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