Does anyone use PPI medication and have you been on it for a long time? I've been on various doses of Omeprazole for years on and off but after a bad flare last year GP doubled the dose to 40mg twice a day and I've been on it ever since.
My symptoms are well controlled and have been for 6 months so I would like to taper down as I've read of long term use and problems it can cause.
Last year it was discovered I am osteopenic and am calcium, vitamin D and iron deficient.
Has anyone successfully tapered or have any further information about long term use of PPI? GP and gastroenterologist say I need the lowest dose to control my symptoms but I'll never know unless I try to reduce? It's never monitored, nobody seems concerned about the long term high dose and I wonder what it may have done to my body?
Forgot to add they also added in 150mg Ranitidine twice a day at the time of flare aswell.
I was put on it 2 months ago. Due to bringing up blood a&e had 2 OGD's in hospital for week on double dose until outpatients OGD they said to One dose twice a day had no problems. Course not out of woods yet. I was taken off ranitidine.
Long winded I know but thank goodness not to do with my Lupus. Wishing you well after flare. Probably be wanting more answers as time goes by like you did. x
Oh gosh that must have been frightening for you, I hope they found the cause of your bleed and you are feeling better now.
I have a condition called GAVE also known as watermelon stomach. It's abnormal blood vessels in the stomach and causes anaemia through blood loss. I was told this can be associated with Scleroderma.
I have been diagnosed with UCTD as I have symptoms of more than one disease but not enough for a specific diagnosis.
Only today did I learn about GAVE feel sure it from your post's. Most interesting and so similar to what mine are now. Thanks ever so much for all your help. x
Yes i was on high dose PPI 2x daily for 6 years alongside domperidone following nhs gastro investigations & diagnosis of my multiple upper GI conditions (chronic: dysphagea, oesophagitis (pre barretts), gastritis (which we now know was due to slow transit small intestines bacteria overflow aka SIBO)). This was in the 10 years before my infant onset lupus diagnosis was recovered, so way before my brilliant lupus expert rheumy put me on lupus meds
When i finally had to be referred for these gastro upper GI investigations, i had already spent close on 50 years life style managing (eg Low FODMAP exclusion diet & GORD self help techniques) my mouth to ass GI manifestations under primary care (GPs who misdiagnosed hiatus hernia etc + colorectal who dealt with surgery on my exit).
So, when my upper GI was hit by the severe critical incident that resulted in that referral to gastro for secondary care investigations, i revisited my self help techniques and adjusted my exclusion diet + excerpts se regime. The combo of revised diet + the PPI nexium (esomeprazole) + the anti-emetic gastric pro-kinetic agent (aka stomach emptying med) domperidone (motilium) immediately showed it could be effective at damping my upper flaring GI stuff, but i still needed at least 18 months on this regime to stabilise my upper GI stuff better...and meanwhile my lower GI hyperreactivity flared in response to the daily PPI & domperidone (diarrhea became my norm). AND meanwhile 3 yearly nhs bone density scans diagnosed an alarmingly fast rate of loss of bone density
So, after 6 years of this self help + daily nexium + domperidone , i told my GP i felt my upper GI was well enough stabilised so could i try weaning myself of these 2 meds. She sad: no! You need these forever. I was so exhausted by the diarrhea & concerned about my bones, that i quietly ignored her and stopped both meds dead, (no weaning) while conscientiously keeping up the Low FODMAP exclusion diet + excercise. HURRAH: my upper GI stayed relatively stable, the diarrhea became less severe, but, even though my diet + exercise regime had seemed to be slowing down the rate of loss of bone density, i did continue to segue into early onset osteoporosis...and what we now know was my AID-related intestinal insufficiency did continue to progress
Since then, prescribing guidelines for PPIs have changed as have guidances for gastric pro-kinetic agents like domperidone long term. And, as i understand it, both loss of bone density & diarrhea are now acknowledged side effects of both types of meds. I’ll see if i can find links to info, but someone else will probably contribute these...
Am now 65, still managing all my chronic upper & lower GI tract issues.l. but now with nhs tertiary care help, and none of my specialist think PPIs & meds like domperidone are appropriate in my case because in complex dysautonomia/osteoporosis/intestinal failure AID cases like mine the risks outweigh the benefits, and, lng term, my lupus meds + IVIG + v specific gastro meds (methylcellulose + EEN) + self help are making a big positive diff for me
Sorry for going on at such length, but i hope something in there is useful to you or others reading your thread
Hi Barnclown thanks for your reply. I have often read your posts and wondered if I am heading down a similar path. My symptoms started 5 years ago with food not going down properly and feeling very unwell, hair loss, fatigue.
GP did some blood tests and rang to tell me I was anaemic and would need an endoscopy to find out where the blood loss was coming from. I was also tested for coeliac but that was negative.
The endoscopy showed a condition called GAVE (watermelon stomach) and this was treated with laser to seal the abnormal blood vessels. I've had this done twice now but my ferritin continues to drop and I'm on iron supplement.
Two years later the autoimmune diagnosis started after my Raynaud's got worse and after tests I've been diagnosed with UCTD with symptoms of Scleroderma and Lupus.
I have tried to taper the PPI twice now but each time the gastritis returns. I'm aware of the risks of taking long term PPI and particularly now I am osteopenic but I'm at a loss as to what to do. I have radically overhauled my lifestyle and diet which has helped.
I have an appointment on 24th October with Gastroenterologist and I am keen to make the most of this but not sure what questions to ask. My Rheumatologist has recommended Azathioprine for UCTD and has said this would also help with GAVE? I am also under investigation for PBC (liver) for 4 years and last year they found I have an enlarged spleen with no obvious cause 🤷♀️.
Thanks again for your reply and the links, I hope you are as well as you can be.
Thanks for explaining. You’re coping with a lot, v bravely, i thnk! And i like the way you’re looking at everything. My research has covered watermelon stomach...so far this doesn’t seem to be part of my mix...i don’t envy you! If i were to suggest anything, it would be to ask about the possibility of checking for SIBO - unless you & your medics have already excluded this. It’s turned out to be key in my case: had we realised earlier that this is in my mix, i might’ve has more chance of understanding my case, minimising some aspects + avoiding the PPI thing running quite so long. But instead of PPI, my SIBO means long term daily antibiotics (which is necessary anyway due yo my Primary Antibody Deficiency Disease), so...hope you’ll keep us posted 🍀❤️🍀❤️
When I had a big flare last year I had diarrhoea for six weeks and they did a calprotectin test which showed inflammation and then a SIBO test was mentioned along with an ultrasound (how they found the enlarged spleen).
As the inflammation settled between appointments the SIBO test was never done. Thanks for pointing that out, I'll mention it when I go 😊.
I worry about the amount of esomprezole that I take for my reflux, I've been on it for 20 years s, and I won't be able to come off it. It does mess about with your magnesium processing. It's the lesser of 2 evils for me, and I'm also on antibiotics for SIBO and metrochlopramide for delay emptying of my stomach. ( I have scleroderma)
Hi MissusTee thanks for replying. Did you develop SIBO because of the long term PPI? Also how did you know about the magnesium processing? I have been getting quite severe muscle cramps/spasms and wondered if it might be magnesium deficiency.
I can't see me being able to stop the omeprazole, I suffer with stomach pain frequently and have tried tapering twice now with no luck 😫
I developed SIBO because my guts move so slowly, but the esomeprazole certainly creates the right environment for it to flourish. Unfortunately magnesium deficiency has been associated with ppi use for a long time. I really don't have any choice because my reflux is very bad. My diet is good, I am a vegan, I don't drink, rarely drink fizzy drinks etc, so I can't do much else.
I'm the same, reflux is awful and impacts on food choices for me, I can no longer eat many of the foods I used to enjoy 😔. I stopped drinking alcohol and caffeine 18 months ago, stopped eating meat and recently gave up fish and went vegetarian.
I find this has helped with gut motility and my overall energy levels have improved aswell.
I have been determined to better control my acidity problems for a good while now.
I had quite a severe gastro intestinal bleed last year and every doctor since had wanted me to take ppis. Following my reading I have no intention to take these drugs for anything other than the shortest possible period in extremis.
I have been trying to educate myself as to what I have eaten and drunk when I get bad acid attacks. I have had success but then fall back into a pattern of getting acid again.
We were just discussing this at the dinner table when I remembered that the actor Sir John Mills, who lived to quite an advanced age, used to follow a food combining diet. The Hays Diet.
This separates foods into different groups. Some of which can be successfully combined, but some which shouldn't be eaten at the same time due to digestion issues.
As we were talking and I was looking at the suggested food groups, I believe that when I have followed these tenets I have indeed had less acidity issues.
Hi thanks this is interesting. I recently became a vegetarian so am following some of the principles of this diet already without knowing! Will keep an eye on combining protein and carbohydrate to see if that causes problems.
It's funny you mention that. I came to a conclusion that from an acidity control viewpoint it was probably easier to prepare veggie meals. But also pizzas pies and even a meat based sandwich could cause problems.
That's due to the gut producing too much hydrochloric acid to break down items in opposing food groups.
I am going to try to remember the group's when eating and see if it really is true for me.
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