Since this is a topic that is very relevant to us, I thought I would post the link to the study. They recommend using H2 antagonists where possible and say
"Clinicians including prescribers and pharmacists should be aware of the adverse effects of taking proton pump inhibitors for an extended period of time. In addition, the patients taking proton pump inhibitors for long-term should be monitored for the listed adverse effects"
"Monitored" - that would be a novelty ...
thanks for this. It makes me feel good that I was never prescribed a PPI but I know many who are on them and will pass it on.
Another thing for me to worry about! I’ve taken omeprazole for most of the past three years and the rheumy has just double my dose. I will definitely talk to them about monitoring especially as I think the plan is for various bloods to be taken in January.
I noticed the comment about vit B12 and interestingly I started taking this a little while ago but was going to stop. I might continue.
The renal stuff is the most concerning though.
Thanks for this. I've been pondering this for a while and think I will suggest to my doc that I try giving them up and see what happens. I'll work out a taper and get his thoughts on the matter. Got my twelve-month review tomorrow (Wednesday) so may suggest it then.
There's always H2 antagonists which fell out of favour, mostly due to good marketing by the PPI people claiming their products was SOOOOO much better at stopping acid. I don't think they are THAT much better at stopping acid but that extra effect is probably what leads to some of the problems. The renal and CV effects are a concern in older patients who are almost certainly on other stuff with a doubtful reputation. Even paracetamol is coming under increasing suspicion - and GPs are still handing that out like smarties ... I imagine there is a good reason for those who reach advanced ages being proud of "never taken a tablet in me life guv"!
ox.ac.uk/research/what%E2%8....
Interesting indeed! Doesn't everything come with a warning label as long as your arm...it is a challenge. Look at Prednisone, ok, let's not. My first stomach bleed from ulcers was when I was 29...count 'em, 54 years ago, and I've been on PPIs since; fortunately, mostly H2. For the last four years, since GCA, I take 3 sucralfate and 2 pantoprazole a day.
It is always a situation where we weigh the benefits of what we ingest. Sometimes, ingest we must~~💞
Thank you for highlighting this PMRpro .
I tried a slow reduction 4 months ago , it seemed to be working until I had a croissant one morning for breakfast.
Immediately my stomach blew up like a balloon.
Awful symptoms for weeks until I relented and restarted them .
It seems to affect stomach visceral lining and anxiety as well as the resurgence of gastritis .
I’ll try again, it’s obviously another long slow taper for some of us .
I wouldn’t have believed it if I hadn’t experienced it . xx
I even went to hospital at 4am I was so unwell, I usually avoid hospitals like the plague . It didn’t resonate it was the Omeprazole but as soon as I restarted them the awful symptoms stopped.
At least you know that they are working for you. Wonder why it was the Croissant? Had you had them previously with no problems?
Hello Bcol ,
Yes I’ve had the odd croissant without any problems while taking Omeprazole.
I had gastritis and silent acid reflux, even while taking gastro resistant Prednisilone.
Had gall bladder removed unnecessarily, and developed CKD .
I asked my GP why he hadn’t told me I’d developed it and what had caused it .
He said they don’t tell people when they’re stage 3 and borderline and he thought it was Nitrofurantoin had caused it .
I think it’s the Omeprazole.
I’ll try taper off again. x
Very interesting, I have also developed stage 3 CKD and was told one day by the GP. I will now probably blame the omeprazole which I take for my hiatus hernia and reflux disease. Been on them for years, I often reduce to 1/day until the reflux gets too much. The list continues.
I would blame the Omeprazole for that, it’s never ending, Taking medication for one thing creates problems requiring more medication. The less we take the better. Reading on how to taper Omeprazole , there are some awful experiences. The H2 antagonists are safer but they bring their own side effects. Even the natural supplements have an effect on our kidneys .
But you don’t want unopposed acid , it’s incredibly painful. Take care
The highlight though is that H2 antagonists are the first step - if they work you are OK. And there IS a place for them if all else fails. Mind you - there is an awful lot of fat in a croissant!!!!
The delicious treats are bad for us PMRpro , I take daily ox bile , but have very few carbs , fats and spicy foods.
I had to go to hospital I went into retention. Food wouldn’t go down, neither would fluids .
As soon as I restarted the Omeprazole everything started working again after 3 days .
But at what price !
I’ll try taper off , but it was a horrible experience. I investigated it, it was the gastritis that caused the stomach problems but taking something that’s bad for other organs isn’t a great solution, plus I don’t want to risk dementia and other nasties .
It definitely affects our minds , that’s a common symptom for people who taper off .
Take care xx
When I joined the Forum in 2018 I read posts about PPI's, side effects and chose the alternative route advocating yogurt. My GP at the time really I stated I took them and in spite of telling him I was fine with yogurt he continued prescribing. I asked the pharmacist not to dispense them in the end.
This time around I told the doc not to ptescribe them because I wouldn't be taking them. She didn't attempt to persuade me.
Still here, still taking pred with yogurt and no probs so far!
Making and drinking kefir wiped out my IBS and then GERD years ago. I still drink it daily and have no digestive issues with prednisone or naproxen. It's so simple and cheap.
Interesting!
Thanks, that's really useful! I stopped taking them for a while as an experiment to see if it helped my chronic diarrhoea (it didnt). I was warned that I would get severe acid reflux and would need a good supply of Gaviscon. But I had no effects whatsoever. I think I've read that they don't work with some people. Maybe I'm one of those.
Just now read an article on this written by Dr. Mercola. I've been taking rabeprazole for GERD for years and dose was doubled when I started with esophageal spasms last Jan. I'd make a ruddy good case study with all these vertebral fractures (now 9). Osteoporosis does not run in the gene pool. So it was not "just" the Pred I'm thinking. Thanks for sharing.
Thanks for this. Last time I saw a GP I asked her to give me H2 antagonists but she said the pantoprazole was much better. I think I have at last found a GP in this practice who , like the one who retired a year ago, finds it reasonable that I check out my symptoms online!!
I will make an appointment in the new year and ask him to change the pantoprazole to H2 antagonists.
Best wishes to you and everyone for Christmas and the New Year
Kate
Brain washing - the marketing tells them it is MUCH better and they are naive enough to believe it.
On another level - when it comes to pain relief, you could say that death is a much better remedy for pain than other options - not very good for you in the long term is it?
Thanks Pro. That’s a really interesting article.
I was on PPIs off an on, since being diagnosed with PMR. Now diagnosed with gastritis, after being prescribed yet more PPIs, I asked to switch to H2 blockers and have been on them ever since. They work for me.
There was a point where I had to stop the H2 blockers for 2 weeks, for a medical procedure, and the thought terrified me. I managed to do this by drinking almond milk and taking Gaviscom where necessary. This might help those who decide to taper the PPIs. I also read that eating 8 almonds a day is hugely helpful, but sadly I am not allowed to eat nuts!
Why the almond milk?
Almonds help neutralise stomach acid
Interesting thank you. I do use almond milk sometimes and usually have flaked almonds on my yogurt (with blueberries, pumpkin seeds and chia seeds) for breakfast.
I just spoke the the pharmacist here and mentioned about the PPI side effects. His response was lots of people take them; they are widely prescribed. To which I responded that in itself didn’t mean they were good for us.
I didn’t bother with a bigger discussion.
I don't understand the non-questioning attitude, I really don't!
Thank you for sharing this with us.I eat onken natural yogurt with my pred. I discovered onken last week in Tesco (rather than Lidl's own brand) and it has more calcium and much less carbs. It costs quite a bit more but better for me.
x
I care less about the numbers than the taste to be honest - within reason that is!
It tastes yummy 😋
Yeo Valley good, too
Oooo will have a look. Thank you 🙂
There have been items in the BMJ too and I have heard the same on the radio.
Interesting article, read similar over the years. Been on a PPI since the early ‘90s. At the time it was prescribed I was told by my Gastr. to take B12. I’m monitored annually via blood workup, etc. as part of my physical. Nothing so far. But like I’ve said before, to date I’ve not been allergic to anything (including vaccines), and any side-effects are usually very few (1-2) and easily managed (eg when was on Pred.)
I’ve gotten to the point that I don’t put much credence on the circulars as I believe it’s a CYA exercise to reduce lawsuits. I also don’t fret about “down the road, what may be” I’ll deal with it if or when it happens. That attitude I think is what keeps my level of stress low. My only initial concern when had active PMR was a doctor refusing to refill my Rx. Once my GP let me know she wouldn’t that happen, then I was care free. Didn’t really care if PMR last 2 or more years, it was just a pill I needed to take daily. I knew about where I was and when it abated, it abated. I did reduce my level of activity, but that was a good thing as I learned to relax which is difficult for a AA+ personality.
I wish they'd tell you how to come off them!!! I've been on Omeprazole since 2015 when I started on my high dose predisolone. I just kept taking them, until a few years ago when I read more about them, mostly on here. I have since tried a few times to reduce...a version of dsns!!! But I get terrible rebound reflux which Gaviscon does not help!!
VERY slowly! But it also helps to switch to an H2 antagonist while going through the process, substituting the H2 antagonist for the doses of PPI you are missing out. Then it is easier to get off the H2 antagonist.
Hi,everyone,it’s a long time since I posted anything but I’m in the dark about PPI I can never remember all the abbreviations! and what they stand for.I am on Lansoprazole is that the same as Omneprazole?I don’t seem to have much contact with my GP regarding my PMR, no check ups,rheumatology. I have to request a blood test re ESR etc Look forward to some clarification from you and everyone. I’m wondering if the diagnosis of Diverticulosis has anything to do with it.
Omeprazole and lansoprazole are two different PPIS, Proton Pump Inhibitors.
There is a post on abbreviations - it will be under A in the FAQs.
How do you come off Omeprazole? I've been on it for nearly two years. My rheumatologist constantly bangs on about the dangers of Prednisolone but has never mentioned the risks of Omeprazole. It's shocking to read of the risks of kidney damage. Do you need to be on Omeprazole even when you're on a low dose of Prednisolone?
You need to reduce it -similar to Pred. Maybe halve the daily dose initially or miss a day first week, 2 days second week: days 3rd week etc.
Depends what dose you are on at present -and doing slowly will make you aware if there are any hitches along the way. Just stopping it may well lead to acid reflux issues.
I refused to take PPIs as they upset my stomach but was always careful to take the Pred with food. Then I started using gastro-enteric capsules and put the Pred in them so didn't need to worry. I also now take Cimetidine which is a H2 blocker for my 'food reactions' and also a stomach protector, so I'm doubly covered
I recently went to an absolutely useless Immunology appointment with a young doctor who tried to explain my allergies with b*llocks including such gems as 'it's because your adrenals are suppressed by steroids' and 'steroids erode your stomach lining so you get digestive issues'. I know I need to complain about this nonsense and his inability to give a damn, but I am just defeated now, I give up, what's the point, nothing will change.
I know where you are coming from - but it MIGHT ...
Do you mean he might be right or that things might change? I asked him what evidence he had for those assertions and he stood up and finished the appointment. The Immunology dept at Leeds are famously (on various forums and support groups) not interested in treating mast cell issues or even acknolwedging they exist.
If people don't complain nothing changes. OH used to encourage people to complain!
Yeah I know I agree, that's why I'm still involved with trying to improve things for PMR. But EVERYTHING is just sh*t now, I can't get to see a GP so need to complain and move to another practice. Every appointment I have with anybody from consultants to nurses to physiotherapists is just useless, a tick box exercise of 'not my circus not my monkey' keep doing the execises and lose weight. I actually think it is making me depressed trying to sort out these issues and banging my head against a brick wall. It's partly a postcode lottery, when my dad had bowel issues he was in hospital 17 days while they found a solution. Or maybe it's because he's male. And if I moan and say I'm putting a complaint in my friends say I'm always moaning! Until they get ill or need public transport themselves, but they've nearly all got private health insurance and can skip queues. I probably need to allocate a day a week to 'complaining' or I should call it 'campaigning'.
I know - I watch the news/read the paper and it totally puts me off coming back to the UK! Medically I would lose an awful lot.
Stay right where you are. I wish I'd got out while I could, I was all set to move to Germany then got PMR .... How different my life would have been.
Germany has its problems at present!!
Can't be as bad as here
True ...
I like that. Campaigning is a more positive action than complaining.
I have to say when the NHS works well it’s brilliant. (Husband had sepsis and later, quite unrelated, an anaphylactic shock.) And I did get the necessary pred and GCA diagnosis before things escalated (albeit thanks to this forum).
So let’s campaign for our PMRGCAuk charity and to retain our NHS.
I've spent 11 years campaigning though, PMR, disability rights, buses - you name it and can't see any improvements in my situation or that of fellow sufferers. Yes the NHS seems to be good at 'emergency' medical treatment and also treating cancer, once it's diagnosed. And there are a lot of good, dedicated people doing their best working in it. It seems to me though that people are falling through the cracks now partly due to a shortage of doctors but mainly to the costing system imposed, where everything is a transaction to be costed and contracted out if possible. Your GP, if you can see one, is the hub of all that. You are sent for a diagnostic test or consultation. It comes back either negative or positive and either way you go back to your GP, who commissions something else, and each bit takes so long. I waited 3 years for an Immunolgy appointment and it was a complete waste of time, so now what? That's a rhetorical question btw. I don't know if GCA treatment diagnosis and treatment has improved, I've never seen a study on it. A simple measure like how many people lost their sight to GCA before compared to now would be interesting to know
Zoledronic acid infusion - side effects sound horrendous. Any advice?
A tooth with a life of it's own!
Useful article about carb intake
Simvastatin - long term use
Long term use of steroids 
