Proton Pump Inhibitors - what is your experience?

[SummerSummerSummertime]

I’m about to take for a month to try to heal my distressingly inflamed gut / gastritis.

Have you taken them before?
Did you find coming off them difficult?

It would be worth having a word with your pharmacist. I believe the taper is over four to eight weeks depending on the dose. I was on 40mg 20, twenty morning and evening. I began by cutting out the morning dose, then went onto 10mg daily for two weeks, then finally 10mg every other day.

This is the NHS guidance for after stopping PPIs. It is good if you can work out your triggers. Mine is fat from dairy, coffee and spicy food during a flare.

What can I do to help reduce or prevent symptoms after my PPI has been stopped or the dose has been reduced?

• Eat in moderation and at regular times;
• Eat meals earlier in the day and no later than, 2-3 hours before bedtime;
• Elevate your head with a pillow by 15-20cm;
• Avoid bending or lying down after eating;
• Reduce your dietary intake of fat;
• If you are overweight, aim to lose weight;
• Avoid tight clothing or belts which constricts your stomach;
• Avoid or reduce alcohol intake;
• Avoid or reduce smoking and vaping;
• Avoid foods which cause your symptoms, such as spicy food, acidic food and drinks, caffeinated drinks like cola, chocolate, and coffee.

I hate them personally. A drug that coats the stomach would be more appropriate than the sledgehammer to crack a nut that PPI drugs are. I had a five week course in 2016 and I had gastro paresis for nearly a year.

I had a stomach issue that sounds like yours and it dragged on and on for four years with various drugs. I then developed a lesion on my neck and I had a ten day course of Doxycyline and Amoxycillin. I had been given Amoxy previously and that hadn't touched the stomach issue. On day three of having the Doxy, all my gastric symptoms went away. That was 18 months ago. I was negative on bloods for Helicobacter Pylorii but I wonder how good a blood test for the antibodies for HP actually is and if I did indeed have it?

I had post nasal drip, burping, hellish oesophagitis and gastric pain. If my stomach had food in it, no matter how bland, it hurt, if it was empty, it hurt. Antacids made it worse. I tried cider vinegar, that reduced the pain to a degree and I realised that I needed more acid, not an antacid. If I ever got like that again, I would go and ask for Doxycycline.

One of the worst medications I've ever taken.

GP said to take them after I developed reflux (burping) following a period of lots of anti biotics and ibuprofen after a series of surgeries.

Worst decision ever. I went on and off them (and added in famotidine) for around three months.

The side effects were awful. Cramps, nausea, I couldn't face eating for weeks. Waking up with nausea in the night. If sit and look at my lunch and have to force myself to eat.

I weaned off them, and the rebound acid lasted for about 6 months. I had gaviscon in my handbag for ages and I still take gaviscon advance at night.

I don't see any upside to them. They cause awful side effects and malabsorption of vitamins due to the low acid.

I'm really surprised reading al this. I've been on omeprazole a couple of times for reflux. For me it was very straightforward. I can relate to be bit of rebound symptoms I guess when I stopped taking them but it wasn't enough for me to consider going back on them and it soon resolved. It was more or less took them for a while, gut healed, stopped taking them.

I understand you don't want to be on meds for longer than necessary but with this one which is literally about giving your gut time to heal, you might find the best way to minimise rebound symptoms is to stay on them longer so your gut is well healed when given the challenge of extra acid. A mended gut. should be able to withstand normal stomach acid and if it doesn't, maybe it's not mended enough yet.

I take nexium. First thing in the morning and eat nothing for 40 mins.

Fwiw OP, my GP said that unless a consultant says otherwise, she won't prescribe them for more than a two month course as they can be so damaging.

Never had problems with any of them, though find omeprazole works better , take them for reflux which causes, amongst other things, a persistent cough,had it years, given several various medications by GP but nothing ever shifts it

I don’t think you can blame all those symptoms on PPIs that sounds like whatever triggered your need for PPIs causing further symptoms?

i agree with the poster who says they are a bit shocked with all the replies on here, it’s one of the safest medicines used long term and the benefits will nearly always massively outweigh the risks. Long term untreated acid reflux etc has significant risks.

I started an a very high dose then halved it and have been on it 18 months since then. I forgot it when I went on holiday and by the end of I thought maybe I don’t need it anymore. I got some minor symptoms again so started back on it but I keep meaning to go to my gp and see about getting a lower dose.

I take some supplements but deficiencies in otherwise healthy people from PPIs is really rare and only happens after years of use.

This doesn’t sound believable. They are one of the safest medicines.

I believe that there are a number of studies ongoing at the moment about concerns regarding long term use of PPI meds.

Ironically Bananas give me terrible acid as do tea, butter, fat, wine, chilli, pineapple...the list goes on. I avoid what I've identified but omeprazole has made life bearable. Omeprazole works better for me than lanzeprazole I've found.

Well, that's what she said to me!

Said that long term use can be safe but it isn't advised due to the side effects of nutrient malabsorption and impact on bone density.

My husband took them for a decade. They were very effective for his GORD. But they increase risk of osteoporosis

No they are absolutely not and the risks are well documented and have been for many years.

I'd say at this stage every drug on the planet has some negatives, but the positives often outweigh its necessity for certain conditions/illnesses.

I tried them for a few weeks and felt terrible on them. I had awful side effects coming off them too. I find diet, gentle exercise, relaxation techniques (breathing exercises) and the occasional gaviscon before bed much better

Hi, I have similar sounding issues to you. Have your symptoms completely gone? I have been tested for Hpylori several times and it's always negative.

Hi, yes. Within three days of Doxycycline, the GERD, post nasal drip, pain, reflux, oesophagitis, all down by 90%. By the end of the course of treatment all done with. I waited to see if it would all come back but it didn't. I clearly had a bacterial infection that was sensitive to Doxy but not to Amoxycillin.

At the point I was given that course of treatment, I had a cat scratch on my neck that had got infected and was spreading really fast. I was also due to have orthopaedic surgery in 10 days so they hit it hard so my surgery could proceed.

I wanted antibiotics from the outset but because H Pylorii was ruled out, they never ruled in any other bacteria but, as it turned out. It was.

The persistent symptoms were driving me mad. The post nasal drip alone was distressing.

I’m on omeprazole for acid reflux. Not had any issues, and it’s solved the symptoms.

@ CatLandOffTheA3 ·

Yep same sort of symptoms here and GP was just so unhelpful, just cutting me off when I tried to explain and just increasing the dose. I still have flares but nothing like the intolerable pain to start with. I've worked really hard at eliminating triggers, changing my diet and meal times. I'm not totally sure it was too much acid in the first place, as I have a hiatus hernia. Losing weight is helping.

I have tried Lansoprazole, Omeprazole and Esomeprazole for chronic gastritis. The first two cause wind pain that's almost as bad as the gastritis. Esomeprazole works best but I don't like taking it for too long. I taper off slowly, one every other day for two weeks then just rely on Gaviscon.
The best medication I've had (Vonoprazan) was on a new drug trial but unfortunately it's not available in the UK yet.

Sorry meant to agree with JJKate

I also have a hiatus hernia but lots do so not sure if that is a factor or not

They caused terrible anemia in me. I didn’t believe it was them as I was on iron tablets but nothing got my levels up. Stopped them and boom, iron levels went up and I felt loads better and haven’t needed them since

I've been taking a high dose of Omeprazole for years, as I have Barrett's Oesophagus.

I worry about the possible side effects, but those are better than the cancer that the drug is hopefully helping me avoid.

My dose has recently been dropped from 80mg/day to 40. I occasionally get acid now, but use Gaviscon Advance to calm that down.

As always, it's a case of weighing up the pros vs cons.