View Full Version : Anyone tried coming off ppi Meds successfully?
Last year I had an endoscopy which showed I had h pylori and inflammation of the stomach. I'd been suffering for a while with stomach issues/throat issues and was glad to find out what was causing it. Also suffer really badly with health anxiety and kept googling my symptoms and making myself quite ill.
I had the eradication therapy for the h pylori and pleased to say my most recent test showed its gone. However still had lots of stomach issues and found out I had gallstones and a nasty gallbladder infection and a month after the eradication treatment had to have an operation to have the gallbladder removed. I'd been given IV antibiotics in theatre (strong bacterial infection ones) then oral ciprofloxacin to take for a further 5 days. Was taking ppi 2 a day then reduced to 1 a day then I tried to make the switch from ppi to ranitidine but felt rotten.
I've tried 30mg lansoprazole and presently taking 20mg omeprazole. Desperately would like to come off these Meds now,been on them since Dec 15 so about 6mths, I know there are concerns over taking ppi Meds long term as they can cause vitamin def in b12, magnesium and can cause problems with bones, every time I miss a few days thou I feel the acid problems coming back and have to go back on. So frustrating. To be honest I get side effects from the drugs including eptopic heartbeats which were picked up on a 24hr holter ecg, I get small muscle twitches all over from the ppi (the days I dont take them the twitches are gone or a lot less) I also get anxiety from the Meds as the eptopics trigger anxiety and I get into a cycle.
So question is after 6mths on these sorts of Meds how do I come off safely, I think 20mg is the lowest dose in uk and it's a capsual so can't half it. Shall I try 1 every other day? The day I don't take it I feel ok, lot better in fact but after 2 or 3 days feel the acid again.
My symptoms of acid reflux include:- sore red throat, hoarse voice, pain under left rib, ibs symptoms, feel nauseous and joints ache, muscle pain. Also lumps appear in my collar bone area. Not sure what to do?? Are ppi Meds safe to stay on long term? How's best to come off if you yourself have successfully come off? My health anxiety been really bad these last few months mainly because I've not been feeling great physically but had ulta sound of my tummy and ct scan recently and X Ray and everything been ok apart from pelvic phleboliths was noted on the X Ray and the ct scan. Anyone else reading this relate to my problem?? Any helpful advice appreciated.
countrygirl
12-05-16, 22:25
The big problem with ppi drugs is the rebound acid when you stop them. there is no way round this as it always happens because your body is over reacting, bit like people who take painkillers for headaches and when they don't take them their headaches get worse.
You can go cold turkey and use things like gaviscon and hope that the acid reduces over time.
I was going to suggest reducing to ranitidine type drugs for a time then stopping but you have already done this.
Could you reduce to minimum dosage for a few weeks then start taking them every other day and going down slowly.
I am sure I read that if you take ppi's for more than 6-8 weeks coming off them is not easy.
So sorry no easy answer.
Hi Michelle - Yes I came off omeprazole after being on it for 12 years. About 2 years ago I went for a colonoscopy and the doctor asked me if I was talking any medication. I told him I was on Prilosec for the last 12 years. he looked at me like I was nuts and he said stop taking it. I tried to stop cold turkey and my stomach was killing me. He said to slowly wean myself off it which I did. I have not looked back. And I haven't been bothered by acid reflux at all for the most part. The doc said only take it if I need it. My GP put me on it as a maintenance drug and evidently he shouldn't have.
N.
Thank you both.
Noivous can you give me an idea on how you tapered off?
It makes sense country girl about the rebound acid. If it was been suppressed for 6mths then it's going to be worse when not taking the Meds. Drs need to monitor this more closely, I can't believe noivous was on for 12 years. Yes it's defiantly also contribution to bowl issues and gas as the food isn't being digested properly as no stomach acid.
I've read about apple cider vinigar being helpful?
The tablets were useful at the time to treat the h pylori and the inflammation of the stomach but now I wonder how am I going to manage without them.
Stocked up on gaviscon advanced and I may try the ranitidine again.
Shame the ppi don't come in a 10mg as a drop from 20 to zero is a bit steep. Anybody else got any helpful tips ?
Also keep getting eptopics which I never had before this all started. They are def related to the gut though not the heart itself.
Maybe vagus nerve? Or acid reflux? Or ppi tablets causing them? Who knows!! Just wish it would all settle down and be like it used to be when I could eat/drink anything and not have no problems. I know anxiety can also increase acid production so trying not to stress too much over things.
MyNameIsTerry
13-05-16, 09:41
Michelle,
On the issue of the pill itself, if it has a score line down it then that's threw manufacturers way of telling you that you can safely split the pill. Many meds have them and even some that don't can be split but the rules on splitting are:
- never split a time release med, it can stop the timed release function and cause overdose.
- never split an enteric coated pill as that is to get the med past the gut. It can cause irritation too.
- never split down the edge, only through from top to bottom. Pills can be layered with active drug in one layer so splitting down the edge could create one piece with all the drug in and the other with nothing in.
- be careful with capsule splitting because sometimes encapsulation could be to protect your throat from the drug if it can irritate it.
- the med MUST be homogenised. This means the active drug is spread evenly otherwise you very unequal portions like with the layering issue above. A score line indicates homogenisation however not all add a score line so its possible to find out and go from there.
That's all from various health services including the NHS. I did some research on this matter not long ago for someone who asked me about this for their med.
Thanks Terry that information was useful.
The ppi Meds lansoprazole and omeprazole are in the capsual form so I'm unable to split them.
Think I'll try one every other day see how I get on then one every 3 days etc....
Know antideppresants are sometimes hard to come off from prior experience but never knew ppi type Meds can sometimes cause such problems too.
Hi Michelle - I actually did my own thing in regards to weaning down. I went to every other day for about 10 days. Then every third day for a couple of weeks then a couple of times a week. Then to zero. It wasn't an exact science. I just got myself off of the omeprazole pretty fast. One thing I did was I elevated the head of my bed about 4 inches. That's helped a lot with the acid reflux. Only problem is I keep waking up on the floor :D
N.
countrygirl
13-05-16, 17:21
Omeprazole is def available as a 10mg capsule but I don't know about the others.
You have lots of options - change to a ppi that you can get at 10mg and then slowly reduce the number of days you take it over a few months. Change over to ranitidine again and see if you can manage symptoms with help of gaviscon before trying to come off altogether.
I have been taking ranitidine for over 20 years for haitus hernia and last year was asked to change to ppi as its cheaper for the Dr but all ppi's give me terrible side effects ( headache - unbelievable hunger pains - terrible bowel issues) although they are brilliant and stopping acid and for the 2 weeks I tried each different one I could for the first time in 30 years drink alcohol and eat cake! The side effects were so bad with me that I returned to my ranitidine and keep to a strict diet.
Thanks for that, you have been a great help!
I'm exactly the same ppi stops all acid and I can eat and drink most things but side effects are pretty bad. Also don't like the fact it's affecting vitamins/bones etc.
I get the hungry all the time thing too.... Sometimes I get the urge to eat very suddenly and feel faint and shaky if I don't eat.
I'll try ranitidine and gaviscon first if no joy I'll ask for the 10mg omeprazole, I never realised it came in a low dose so thanks again for that.
Ranitidine seems to be safer to take in the long run I think?
I have recently been diagnosed with a stomach ulcer and took 30mg lansoprazole for just one month-I refused to take any more and have controlled my symptoms with an alkaline diet. The doctors definitely don't tell you about the rebound acid effect but admit it when challenged.
I'm awaiting an endoscopy to check that the ulcer has healed but the awful gnawing pain has gone and eliminating as much acid as I can from my diet appears to have worked. Just tweeking your diet may help, Michelle?
Lovely to hear from you Pulisa.
Sorry to hear about your stomach ulcer was it caused by the h pylori bacteria?
Mine wasn't an ulcer but endoscopy showed moderate to severe gastris.
The eradication therapy was quite tough on my gut then I had infection in my abdomen and was given Teicoplanin by IV and ciprofloxacin so had loads of antibiotics in a short period of time which won't of helped my good bacteria. Stomach still not right now but I agree diet is very important. I've found tomatoes are a no no and cheese and a few other foods. Bit of trial and error and keeping a food diary. Hope your daughters doing well. X
Lovely to hear from you too, Michelle!
My h.pylori test was negative fortunately. I think stress was responsible for the ulcer but I'm sure I was overloading on acidic food and strong tea!
You've had a really rough time, health-wise and I do hope things pick up for you very soon. My daughter has just been accepted for psychology input so we live in hope!:D xx
countrygirl
13-05-16, 20:00
Michelle, the first generation of ulcer drugs like ranitidine are much much weaker than the ppi's with less adverse effects although obviously it would be better not to have to take them for as many years as I have! The only risks I have come across with the old drugs is that you can get vit b 12 deficiency but then again loads of people do anyway. They are not associated with the infection risk of ppi's or so they say!
I also found that what I eat has a massive effect, even with ranitidine I had heartburn every single day and had quite a few cameras to check for barratts oesphagus.
2 years ago i changed my diet as I realised that any cake/scones/wheat bread/cooked tomatoes/ anything with herbs or spices/soya anything/veggie products/breakfast cereal/ sugary drinks and worst of all oats and alcohol gave me crippling acid reflux. I have probably forgotten a few.
Within a week of cutting out all these foods I never had heartburn again and as long as I stick rigidily to my diet I am totally fine. I also lost nearly 3 stones in weight as well:yahoo:
Funny you mention oats, I've had these most mornings and notice gripping pains under my left rib. It's awful being so restricted to what you can/can't eat. I wonder if eventually things will ever return to normal or I'll always have to be careful. I had 8 biopsies taken and luckily I don't have Barrett's either but throat is always red and sore. Not got celiac either which was good. Tummy is always grumbling thou and can hurt when empty in which case I need to eat fast or I feel very sick, or sometimes when I eat something it doesn't like I can get really bad pain too. I've raised my headboard of my bed and don't drink tea/coffee anymore or alcohol. I've lost 2 stone too through all this. You sound very knowledgable do you come from a medical background? What dose ranitidine works for you. I was on 300 mg twice a day at Xmas time then 300 then 150.
I have been checked for vit b def and so far ok, but h pylori takes your b12 too so I think for a long time I could well of been low on it so took a supliment.
I'm sure all the antibiotics I've had won't of helped. Just praying eventually it will all settle. Surgeon assures me it will eventually.
countrygirl
13-05-16, 22:12
:) I worked in a medical setting and having ha absorbed information like a sponge. My GP at the time laughed and said ( no disrespect to alcoholics here) but his words were " its like an alcoholic working in a brewery" and I knew what he meant as I could have my fill of health related information.
I used to issue prescriptions as part of my job so had to be very knowledgeable about drugs and dealt with all lab test and hospital test results.
I take 150mg ranitidine twice a day.
I found apple cider vinegar gave me crippling acid so opposite of what it was supposed to do. I think I have tried everything over the years.
I got a haitus hernia when I was pregnant 35 years ago because my son was a large breech baby who pushed my stomach up somewhere around me ears thus causing the hernia.
I can eat cripsbreads although not oatcakes and gluten free bread for example. I can eat biscuits but no cake/scones or desserts. I can eat ice cream but not proper vanilla with vanilla pods in it like cart dor. Its really complicated but once I found a food that did not give me heartburn then I have made my diet around it. I can't eat apples or bananas or most berries or baked beans or any beans but I can eat chickpeas and garlic.
So I can happily eat crispbreads with say dairylea and hummus on it with salad followed by ice cream but beans on toast would cripple me:)
MyNameIsTerry
13-05-16, 23:07
Look into probiotics too. Antibiotics kill the good bacteria as well and this will have a knock on effect to GI issues and even mood. Pre/probiotics are even being linked to anxiety these days.
The issue with the lowest dose of drugs is often that the drug companies grossly overcharge for them to basically discourage purchasing. It's the same with antidepressants. I can probably check some of this as I have some costing docs for the NHS with a lot of meds on.
Thanks terry yes it would be interesting to see the difference in price between the 20mg and the 10mg. Maybe it's because pharmaceutical companies want people on these drugs for life so don't want them on the lowest dose? Just read the info leaflet and max length of time recommended is between 4 weeks - 8 weeks.
I didn't take 1 yesterday and today I'm taking a ranitidine and gaviscon and going to watch carefully what I eat. No oats for breakfast. Wondering maybe to see a dietician and get some input from them?
Country girl I'll come to you with any medical questions from now on :). I'm similar with ha I like to know the ins and outs of anything medical. Last year I requested my gp surgery notes and went through them with a fine tooth comb as I was convinced I had something terrible and nobody was telling me. My mind was working overtime on my symptoms and ended up feeling worse because of the anxiety I'd spend hours each day googling symptoms and medications I was on etc and thought gps were keeping things from me. HA is awful but I've learnt to control it more now. Life's too short to spend everyday worrying about every little symptom. It's for living!!
Pulisa - hope your daughter gets benefit from her therapy and I hope you are keeping strong too. Good luck with your next endoscopy.
MyNameIsTerry
14-05-16, 08:13
Yep, GP's can be bad with PPI's.
My dad had reflux and his GP put him on Omeprazole. He left him on it - for life! My GF saw her GP (different practice) and he only wanted her on it for a month.
I despair at the standards of GP's and this "dose 'em up & push 'em out" culture many of them operate.
Yeah Terry I'm with you. My GP had me on it for years. Went to a gastrointestinal specialist and he said stop taking it. Only take it when you need it. I've been off it now for two years and doing fine.
Hmm...makes you wonder about ssri's. A friend of mine who's in the field of addiction recovery sees a lot of people come in on all sorts of psych meds. He says the vast majority of people on ssri's shouldn't be on them indefinitely. He claims up to a year and then thats it.
N.
MyNameIsTerry
14-05-16, 11:31
Yeah, the guidelines over here for antidepressants tend to be for a minimum of time regardless of feeling better but then coming off. The trouble is if you haven't sorted all the issues first as you can relapse, as I did.
GP's over here don't have much to fall back on so SSRI's are like sweeties really to them. I don't think they all look at them as seriously as doctors with more experience and they just reach for them.
I've seen some interesting studies about how anxiety treated long term with SSRI's can lead into depression. It will be interesting to follow that.
Ohhhhhh don't get me started on antidepressants :)
I had a hell of a time getting getting off those in the past. The worst withdrawals being seroxat/paroxitine and Effexor/venlafaxine!!!!! Nightmare. Pleased to say been off those a while now. Not nice.
Pleased you are feeling good off the ppi noivous-and hopefully no long term side effects from being on 12 years. I'm sure some gps put these on repeat prescription and then you get lost in the system and end up just taking them for years.
It was me suggesting I come off ppi not the gp otherwise I'm sure I could of ended up for years taking them. Useful to take at certain times for certain conditions definitely but to take for an extended period of time I don't like the idea of. Links now to dementia and osteoporosis which can be worrisome as well.
So far doing ok on gaviscon and ranitidine - time will tell.
Believe it or not Michelle my doc wanted me on them permanently. I think what happens is these drugs come out and the big pharma companies are pushing them on the docs who push them on us. The problem is it isn't until years later the medical field starts to see a correlation between these drugs and some growing health concern. Like PPI's and Alzheimer's.
I'm glad we see eye to eye on not wanting to be on these drugs (or any for that matter) indefinitely.
N.
I'm on 6 prescription meds and three OTC meds daily and have been for several years now. I wish I had the choice. Due to my real medical/physical issues, I don't have that choice. Perhaps with a couple of them I do, but the relief they bring far outweighs any risk.
One of them is a PPI. I've been on Pantoprazole (40mg) for almost 4 years now due to reflux issues. I've had reflux issues since I was a teen and would always have antacids around. Then as time went on and PPIs came on the market, I went on Zantac and it helped. I still would have the chewables and liquid for breakthrough. After a really bad episode (thought it was my heart) that turned out to be reflux, my doc put me on Pantoprazole. I've nary had an issue since. For some it's a personal choice, for others it's not. That goes for any therapeutic medication.
I understand your argument concerning side effects, long term use as well as the medical profession and big pharma aspects. If you can manage to wean off and resolve yourself to the proper dietary restrictions to avoid symptoms, go for it but don't allow studies and rare cases discourage you if you do need relief.
Positive thoughts
Certainly in the UK there are proven medical studies which show that long term use of PPIs (beyond a year) cause bone thinning. I would opt for ranitidine (zantac) or gaviscon/dietary modification for long term acid reflux management over PPIs but that is just a personal choice.
Yeah it is absolutely not a judgement call for those that choose to take medications that will help them. I think sometimes though people think that medication is helping them when they really don't need it, as in my case with omeprazole.
MyNameIsTerry
15-05-16, 06:47
Rare cases certainly are anecdotal and often to be discounted but when you get in clinical studies, things change. If you don't need it, don't increase the risk factor. You wouldn't take antibiotics if you didn't need them. Why take these?
Part of the problem in this is the lack of patient information given by GP's. The NHS is very clear in their charters that the patient should be involved in decisions...good luck with that with a GP, they simply won't tell you or choose to miss certain things out. For example, I'm yet to see one person on here say their GP told them their rights to choose their mental heath provider and that policy has been around a while now. All I have seen is GP's doing what THEY want and ignoring the patients rights.
It is often the same with meds for physical things too. They dump you on them to get you out of the surgery and healed quickest so you don't come back. This means reaching for drugs and not a case of whether they work better, it's a question of writing a prescription is quicker & cheaper than working with you to sort it any other way. Ask anyone trying to get physio who just gets dumped with NSAIDS...not a good long term med. And it's the same with antidepressants as they are so cheap...and therapy is very expensive.
If there is a natural way to resolve something like this, it makes sense to try it.
I have had asthma since childhood and I'm yet to be told anything about long term corticosteroid drawbacks. Some can set the stage for anxiety too, or at least not help it e.g. magnesium depletion, health flora depletion, etc.
---------- Post added at 06:47 ---------- Previous post was at 06:45 ----------
Certainly in the UK there are proven medical studies which show that long term use of PPIs (beyond a year) cause bone thinning. I would opt for ranitidine (zantac) or gaviscon/dietary modification for long term acid reflux management over PPIs but that is just a personal choice.
And these studies are conducted by specialists in these fields, then peer reviewed by others interested or specialising who may be quite senior in the field and even reach NICE reviews, Cochrane, etc.
I would trust specialists over a poorly trained GP lacking in experience. If I was taking a penalty and 2 blokes shouted over their advice on how to score, who would I trust? Steve the Lads 'N dads coach or Stevie Gerrard?!!! :winks:
Rare cases certainly are anecdotal and often to be discounted but when you get in clinical studies, things change. If you don't need it, don't increase the risk factor. You wouldn't take antibiotics if you didn't need them. Why take these?
Part of the problem in this is the lack of patient information given by GP's. The NHS is very clear in their charters that the patient should be involved in decisions...good luck with that with a GP, they simply won't tell you or choose to miss certain things out. For example, I'm yet to see one person on here say their GP told them their rights to choose their mental heath provider and that policy has been around a while now. All I have seen is GP's doing what THEY want and ignoring the patients rights.
It is often the same with meds for physical things too. They dump you on them to get you out of the surgery and healed quickest so you don't come back. This means reaching for drugs and not a case of whether they work better, it's a question of writing a prescription is quicker & cheaper than working with you to sort it any other way. Ask anyone trying to get physio who just gets dumped with NSAIDS...not a good long term med. And it's the same with antidepressants as they are so cheap...and therapy is very expensive.
If there is a natural way to resolve something like this, it makes sense to try it.
I have had asthma since childhood and I'm yet to be told anything about long term corticosteroid drawbacks. Some can set the stage for anxiety too, or at least not help it e.g. magnesium depletion, health flora depletion, etc.
---------- Post added at 06:47 ---------- Previous post was at 06:45 ----------
And these studies are conducted by specialists in these fields, then peer reviewed by others interested or specialising who may be quite senior in the field and even reach NICE reviews, Cochrane, etc.
I would trust specialists over a poorly trained GP lacking in experience. If I was taking a penalty and 2 blokes shouted over their advice on how to score, who would I trust? Steve the Lads 'N dads coach or Stevie Gerrard?!!! :winks:
Hey Terry! Great post, man. Just want to bring it back to the top for others to read.
Thanks,
N.
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