Advice needed on coming off tablets

Hi, no I had an appointment with gastro in December following months of burning pain in stomach, I mentioned that I have never had a stool sample or been checked to my knowledge for HPylori, but I was not offered either of these tests.  I have suffered with acid for many years now and unfortunately have IBS too so all of my insides are a bit rubbish.  I am 56 and female and have been on PPI for years.  It is only occasionally that the acid really bothers me and I was doing well until November 2014 when without telling me my gp changed my repeat presciption from 40mg to 20mg esomeprazole, her reason when I called to speak to her was that it can cause lack of magnesium.  No blood tests to check this were offered.  I managed to reduce it until early January 2015 when I had tonsilitis and was given anti b's, which I was allergic too and then given another one.  I think all the anti b's caused stomach pains and the supplements I started to take in case I was lacking any vits has caused stomach problems, hence the reason they think I have gastritis. I spent most of last year going back and forth to the GP who basically said there is nothing wrong, you had an endoscopy 6 years ago and cannot have another one.  It was only after really insisting that I was referred in December, which is why I am due to have a scope on the 18th.  One thing that has happened is that I have stopped all supplements and the pain which was like a burning stabbing pain all over from chest to pubic area has settled.  I have tried to come off PPI's so many times but the acid which is barely present at all while on 20mg comes back with vengence.  I honestly believe I will be on it for life.  Take care

Sent both you and Looloo PM. let me know if you do not receive it and will resend.

Hi, I have hopefully sent you a PM, have not done one of those before. Let me know if you do not receive anything and I try again.

I've received it. Thank you so much I'll order some now.

I've got down to 20mg of omeprazole now. Did you switch directly to ranitidine from omeprazole or did you do alternate days on omeprazole as your taper?

I had a endoscopy which came back clear. I've been on omeprazole 5 years. I never get acid after eating. The only time I know I've had reflux is when I wake on a morning and my throat is burnt. The doctor said its volume reflux. I've propped my bed up to see if this helps.

I've tried to stop omeprazole before and got the nasty rebound acid.

I really want to get off this medication as I was obviously prescribed it for the wrong reasons like so many others

Hi it was perhaps easier for me as I was already down to 20mg, GP insisted about a year ago I did this. So just stopped and went straight onto ranitidine 150mg prescribed by GP and took the zinc c which I am convinced made is easier to come off. I have tried before and got the acid but hardly noticed it this time. I was off for the 2 weeks when endoscopy got cancelled and rebooked 10 days later so just stayed off. Have probably taken 5 in 24 days and only when bad acid, probably due to chocolate overdose which always does it for me. I can honestly say that I feel better without them, I do get the white frothy stuff in the mornings but as the endoscopy was completely clear do not believe I need anything more than OTC medication now along with the zinc. Good luck and perservere as it is worth it, if not for health the money it will save in prescriptions has got to be worth it.

Thanks for your help, much appreciated X

Hi we've spoken before I think. Glad to hear your endoscopy was clear. Just to recap I was diagnosed with stomach ulcers at the beginning of January. However the biopsy for H.pylori was negative. My question is I was taking omeprazole at the time of the endoscopy and the specialist didn't tell me to stop taking them so I'm wondering if it's possible to have a false negative result. I'm now on lansoprazole 30mg twice a day but for nearly a month I was only taking one tablet a day because he messed up the prescription. I'm beginning to lose confidence in him. You were told to come off ppi's - did they explain why? Any help greatly appreciated 

Hi, yes we have spoken before. I was told to come off them in a letter from the endoscopy department. It explained that as I as having a h pylori test I would need to be clear of any PPI or raniditine but could have gaviscon. It explains that this was because hp would not show up with these in my system. I googled it and got the same answer so yes I think you could have been given an incorrect result. Try zinc carnisone for your ulcers, Google it they helped me come off PPI's after 9 years as they calmed my stomach. I do take ranitidine 300mg per day which helps but am trying to stay off esomeprazole and only take 20mg if all else fails, usually after eating chocolate, which I know I shouldn't do but sometimes it is so necessary LOL.

sorry zinc carnosine

sorry spelt the zinc c wrong but when sent correct spelling moderator stopped it. Google zinc carn - Amazon

Thanks so much for your reply. I'll try the zinc cam and see how I get on. I'm definitely not improving although I do have days that are better than others. Bad day today probably because I had too much cheese last night, naughty girl and I know what you mean about chocolate! I've also got high cholesterol so my diet generally is really boring (I couldn't resist the cheese). Getting old sucks

Cheese is another one of my problem foods but I still eat it and wonder why I suffer. Getting old is a bugger I agree, but I say to myself I am only 56 and not old in my head. Take care

Hi youngatheart. we have chatted before on here, & i was so interested in you having been able to come off ppi's after 9yrs with zc as substitute. i bought some of the zc as i too want to come off ppi's after 3.5-4yrs, & this week have tried to go down from 20mg esomeprazole every day to every other day for few weeks alternating days with zc until I can come off ppi completely, with yesterday being the 1st day of zc - one in the morning & one at night. early hours of this morning I was puking up acidy sick, burping profusely & today after getting up have sore very bloated tummy with hot feeling & stomach ache, very nauseus, so reluctantly took 20mg esomep. at 2.30am & another 20mg at 9.30am as it feels like i have acute gastritis. I dont want to give up on the zc, but equally have not been able to go to work today so cant have that going on... i just wondered if you can offer any advice how you came off the ppi's-like routine with meds, doses, how much zc do you take & how often in the day. any advice welcome. thanku.

Hi looloo, so sorry to hear of your problems, I have been taking PPI's as you know for 9 years now. In Nov 14 GP without asking me reduced my repeat presc from 40mg to 20mg per day, I was not happy as I knew I would not be able to cope, so I took 20 - 40 - 20 for a couple of weeks until I could manage on just 20mg, but this may be why I could do it, if you are UK your GP can prescribe 150mg tablets of ranitidine and you can take 2 per day of these, so PPI and Ran together worked wonders until April 15, I had a small skin cancer removed which became badly infected and I was given 3 different anti biotics and also took iburpfoen , I was also taking supplements as I felt so ill. I was at GP's at least twice a week with stomach pains which I was convinced was cancer in the end the GP said it was in my head but under duresse agreed on arranging an endoscopy which took from Sept 15 - Jan 16 to get arranged as it was cancelled twice. While waiting I went on holiday in Oct 15 and took no supplements, ibuprofen or anything apart from PPI, within 3 days the stomach pain was virtually gone, when I came home I started supplements again and within 2 days pain there again. BINGO, I went to GP who said the tablets had given me gasrtitis she said plastic coatings on pills burn the stomach lining, so endoscopy was even more important to see if any damage had been done, thankfully it hadn't. So when GP said I had to come off PPI before endoscopy I was freaked to be honest as I did not believe I could manage without them as if I even missed 1 day I was in agony with burning right into my throat. I have a friend who introduced me to zinc carno (cannot put full name as moderator pulls the post) I took 2 x 17mg tablets in the evening before dinner and can honestly say that my stomach felt calm and settled within a couple of days so I am sad to hear that you are not having the same reaction, but we are all different I suppose and if you google them they get rave reviews so take after a meal which might help. I still suffer some acid and now take the ranitidine which is gentler and has a different way of working. I have taken the odd 20mg PPI but only after chocolate/cheese which I know causes my problems. Hope you feel better soon and let me know how you are getting on

Thankyou for your advice. I am going to take 2 x 20mg esomep. daily for rest of week to get my tummy back in order (reluctantly!). It says to take one two to three times daily. i took one am & one pm on the 1st day i didnt take ppi & had the problems on monday night. i note you said you took 2 in the evening. maybe it would be worth me trying 2 at night the night before my next day off work (in case of problems again) & get some ranitidine to take alongside the the zc on the alternate days not taking ppi. perhaps i should run it past my gp before trying any other method actually & reluctantly stay on the ppi's for the immediate future as i know they work for me. just dont want to stay on them forever because of the long term effects they can have on weakness of bones & immune system.

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Regards,

Alan

Hi how are you getting on. May I ask why you are so keen to come off PPI's. The reason for asking is I have been off for nearly 2 months now and things are starting to get worse, my acid is coming back and I have had to take a couple of 20mg tablets. I did not feel any different when off of them and to be honest the fact that I have nothing wrong after the endoscopy proves that they do not cause problems, well not in me anyway. Would that have been the case without taking them to protect my organs, I will never know? After 9 years on them I can honestly say I have had no adverse reactions, I was on 40mg per day then down to 20mg which works for me. You hear a lot of scary stories but there is no proven results from anywhere to say they are that bad. I have not heard about bones and immune, just that they lower B12 and magnesium for which I take a supplement. Unfortunately although I do want to take again I think I may have to even just every other day with ranitidine as I am beginning to feel worse without them which is disappointing as I was coping so well.

Hi youngatheart. I was off work for couple of days after stopping the ppi for just 1 day due to v.bad acidy sick at night, & upper stomach pain - it felt like I'd done 200 sit ups! I've eaten blandly for the last week & had plenty of low fat milk to be easy on stomach which is clearly inflamed- i was very swollen, but this is starting to ease a bit a week on. i am taking 2 x 20mg ppi one am one pm since the episode last week & will continue until my stomach feels back to normal. (probably another week or 2). its quite normal to increase the ppi when gastritis strikes to cut down the acid & help stomach heal/recover. i usually take just 20mg in morning. i am seeing my doc on 3/3 & this is going to be one of the things i need to discuss. is all the bad publicity just usual scaremongering? has she seen any problems in patients that have been on this ppi long term? i wanted to try & come off them because all the bad publicity scared me a bit. but then every leaflet with medicine has a list of poss side effects, its just that the ppi's effects are more well known & publicised. bone problems, immune system weakening & even heart problems. trouble is when you "hear" or read about these things in press-natural thing if it may affect you is to google-probably big mistake as you just read more negative. like you the ppi's dont actually give me any ill-effects, they control a horrible health problem that if untreated causes lots of damage. so I'll stay on them for now & talk to my doc in march. i may ask to get my b12 & magnesium levels checked though. i do take a multivit with everything in, but wouldnt hurt to check these two if taking ppi's. xx

Hi glad to hear thing are easing. I agree that it was the bad press that made me want to come off it. But as I said in my past post being on PPI's for 9 years has caused no stomach or throat problems and may have helped keep these things at bay. Took a 20mg PPI yesterday morning and am now starting to feel the need to take another one. I think as I feel no better without them I am going to continue on the maintenance dose of 20mg every other day with ranitidine the other days. I still take my zinc as they work for me and this may have been why I could stay off them for so long. I asked my GP about the problems and she just said magnesium deficiency is one they worry about, but clearly not enough to offer me a test. I am going to ask for that next time I visit GP. The only thing I have noticed since going back on them is more pain in chest area, but had an x ray and scan last year when all my problems flared up and all clear. I honestly think that everything we eat or drink can have some kind of adverse effect it gets you down trying to work out what is good and what isn't. Take care xx

To find a very good article on what is happening when you reduce PPIs or eliminate them, try googling this: What to expect if you reduce PPI use. The article also explains why, in some cases, it's important to stay on PPIs. There are side effects - but there has also been a lot of scare mongering. I would like to go off taking my PPI because of risks of bone fractures for one thing however, inflammation of the esophagus over time can result in esophageal cancer and I'm pretty frightened about that. My PPI is the best hope for avioding that result.