As per my previous query, I am still experiencing diahorrea and regular leakages from the bowel. My recent poo tests showed abnormally high Faecal CalProtectin levels, 249 vs a normal score of under 50, indicator of a relatively high level of inflammation for which NICE guidelines suggest a referral to a gastroenterologist.
I am currently on 5mg of Prednisolone having started on 20 last November. I have been taking 20mg of Omeprazole daily since December.
I have read that Omeprazole can cause bowel irritation, and other members of this forum have queried the need for Omeprazole at under 10mg. My GP phoned today and said she was referring me to a gastroenterologist (sounds like she is reading straight out of the NICE book.). I asked if I should stop taking the Omeprazole and she said NO! I asked if she thought the Omreprazole was causing the problem and she said NO! This GP is not one for two way discussions.
It seems to me that I have several options. I could wait for an appointment with the gastroenterologist which could take months, I could refer myself privately to someone else, I could ask to see another GP at the surgery, or I could simply taper off the Omeprazole.
Any pearls of wisdom and advice from my friends out there?
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ChrisBeeLoop
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There are alternatives to omeprazole, other PPIs and also H2 antagonists such as famotidine and cimetidine plus others. You do need a referral as well, but there is nothing to stop you trying something different that does the same thing, reduces acid production.
Thank you, PMRpro. I had a quick read up on alternatives to Omeprazole but don't know the difference between PPIs and H2 antagonists. One website said Tums indigestion tablets were a good alternative. But why am I taking this stuff anyway? I didn’t see it in the NICE guidelines for PMR but I will have another check through. My inclination at the moment is (a) taper off Omeprazole and (b) ask to see another GP who might be prepared to explain rather than pontificate.
No, Tums are just something to neutralise acid. These drugs actually stop the production of acid in the stomach lining. Pred, especially at high doses, can irritate the stomach lining mechanically but it also, at any dose, changes other things by having an effect on substances called prostaglandins and that in itself can cause damage to the stomach lining, increasing the risk of developing ulcers in some people. SOme people have problems at all doses, others have no apparent problems but it can be a "silent" problems which is why some doctors are so emphatic about using them.
The PPIs and H2 antagonists stop most of the production of acid but in different ways - and so have different side effects.
NICE doesn't have "Guidelines", they provide articles that summarise what is in the literature, almost certainly not written by an expert though even Prof Mackie doesn't know WHO.
I fully agree about changing to a less dictatorish doctor - explanation and agreement is a far better way to go,
In addition to what PMRPro said, I’ll add that even if you swap to another type of anti acid you might find there’s a bit of rebound acid until it settles. I didn’t get on with Omeprazole at all and one of the symptoms was that my lower gastrointestinal tract joined in too. I had a bumpy couple of weeks after the swap. You still need to get them prescribed from somebody though.
Yes, I have seen a lot about bounce back if you stop Omeprazole suddenly. I think I might just ease my way out of it. I still have a query over whether I need it at all if I am only on 5mg of Pred.
If you do decide to stop, which I decided to do when I stopped Pred, then I tapered off by missing one tablet every week. i.e. no tablet on Monday week one, no tablet Monday and Tuesday week two etc. So seven weeks in total. Seemed to work fine for me.
They are probably wanting for you to wait because you can also get high calprotectin in the faeces with gastric problems like ulcers as well as IBD or diverticulitis. If the stomach itself is irritated at the moment the dose may not be the only factor you need to consider.The Omeprazole would be giving you some level of gastric protection in that case until you were seen by gastroenterology.
You could ask them about a different PPI , or a lower dose , but you would need to taper off whilst starting something like an antacid or H2A and gastric resistant pred to prevent gastric reflux coming with a vengeance. It would probably be worth speaking to another GP about that again and getting an approximate waiting time for gastro appointments. Finding out what the GP thought was the cause would be handy , is it bowel , is it stomach, or is it both or just a side effects.
It might be worth reducing foods with spices , citrus and too much sugar at the moment too , drinking more water and having five small portions per day instead of three big meals to put less strain on the digestive system.
Hi Chris, just to add a little something for managing the diarhoea whilst waiting for diagnosis and treatment of the cause . . . do use Dioralyte or something similar. Diarhoea can be very weakening. I had it for weeks a couple of years ago . . . never did get to the root cause of it but managed it with Diarolite and dr suggested some vitamin supplements. I think the problem with any extended period of diarhoea is you are not absorbing the nutrition you need which will weaken you.
hi don’t know if this helps but I have had similar bowel problems to you in episodes - I do have ibs which causes these problems when I have a flare up. I am also on 5mg Pred now having commenced in late September 2023. My GP prescribes omeprazole but only 10mg. I take it only 4/5 times a week though - my decision. Could you maybe try reducing the omelrazole does to see it that helps? Good luck anyway,
I’ve reduced down to 4mg pred and I just stopped taking Omeprazole a few weeks ago. I had been taking it for 10 months. I started to worry that it was affecting my magnesium levels as my Restless Legs got much worse. GP agreed I could reduce from 20 to 10mg per day but he said I should keep taking them to prevent a stomach bleed - which scared me - but after reading what other people said about them I felt that they were doing me more harm than good and that the guidelines for prescribing them need to be updated.
I always take my pred after/ and with food and since stopping the Omeprazole I also take them with some Greek yoghurt. I hope I’ve done the right thing - but I have to say I feel a bit better since I’ve stopped taking them and I wonder whether I had side effects which I had attributed to the PMR/steroids?
I should also add that when I first tried to miss out alternate days at 20mg Omeprazole - I got terrible indigestion (which I have never had before) so I had to cut down to 10mg per day then alternate days carefully - it probably took about a month to stop them and for the indigestion to settle.
Hi, I have the same problem as you. Diarrhoea most mornings, high calprotectin (450). I was referred to a gastroenterologist but all he did was get me a colonoscopy to test for microscopic colitis. It was negative. I only saw him once. He said if the test was negative I was to try the low FODMAP diet.
This hasn't made any difference. However I have identified that onions affect me but not garlic, and sometimes tomatoes. Apples, but not citrus. Red wine and prosecco but not white wine. I have been trying to find a pattern for the last 3 years. One thing I have noticed: it's always bad on a Wednesday morning. What do I do on a Wednesday? I go shopping. (It gets embarrassing to have to keep running to the loo in Tesco!) It's also always bad when I'm away on holiday. I've come to the conclusion that it's moving around that triggers it. If I stay still - my usual morning is spent doing emails and admin on the sofa - then I'm fine.
Hope this helps, though I've no idea why moving about triggers the diarrhoea! BTW I'm on omeprazole 20mg and 1mg pred.
So your gastro expert was no help at all! Interesting that you have managed to identify some foodstuffs, but moving around……? I knew exercise was bad for you! I am currently cutting out the fruit I normally have with yoghurt at breakfast time. Keeping the yoghurt. I think I have seen a tentative improvement but it’s early days.
Just thought that I have to reply to this. I was prescribed Omeprazole and Lansoprazole at various times when I have been on steroids. I soon as I got down to 7mgs daily, when I was assured, by my specialist that I would get no side effects from the steroids, I stopped taking them. I think I just ran out and never bothered to get any more. I rarely suffered from indigestion. I tried to take them again this time while I was on a high dose but I am now down to 5mgs daily and haven't taken any for months. What would be the worst thing that could happen if you stop taking them? You might get indigestion/acid occasionally or you might get no symptoms at all, while your existing gastric problems might go away. Why not try reducing the dose just to see. I must have stopped taking my tablets without any tapering. I can't honestly remember, but your side effects do sound unpleasant. The trouble with PMR as we all know is no-one really knows what causes it and everyone seems to have a different idea as to how to treat it. I hope you feel better soon.
"What would be the worst thing that could happen if you stop taking them? You might get indigestion/acid occasionally or you might get no symptoms at all, while your existing gastric problems might go away"
It COULD be more than that. The effect of systemic pred on prostaglandins can lead to changes in the production of acid in the stomach - which can cause gastritis. It isn't JUST the irritation from the tablets, it is a systemic effect which can also be present if you get steroid injections in muscle. It varies from person to person but there is a risk with long term increased acid production in the stomach. Hence the desire to use PPIs.
I too had the same issue and saw a gastroenterologist had a colonoscopy and was diagnosed with microscopic collagenous colitis. He told me not to take Omeprazole as that can cause this autoimmune colitis. He suggested tums or Pepcid. Good luck
I had tapered to 4 mg prednisone. Omeprazole I think was 20mg. He prescribed for gastritis and esophagitis that he felt was due to the prednisone . Once the biopsy came back re colitis he told me to stop the omeprazole after one month and started me on budesonide.. Subsequently 6 weeks later I was diagnosed with GCA and prednisone was increased to 40 mg.I have tapered to 25mg. I take tums as necessary. Haven’t used Pepcid because of the absorption issue of supplements and my neuropathy.
Oh, I am so sorry to hear about your GCA! I thought we would be out of the woods once we got down to lower levels of Pred. Thank you for the info. It is all helping me to make up my mind.
I thought we would be out of the woods once we got down to lower levels of Pred.
That's not how it works...Pred doesn't cure PMR nor GCA [there is no cure ]- it just controls the inflammation caused by the underlying disease until it goes into remission of its own accord.
Worrying thing is some doctors don't seem to grasp that fact..
PS further to my comments above. You mentioned bowel leakage. I also get that, particularly brought on by walking. My GP has referred me to an incontinence service. This was in July. I received a phone call from them asking about my problems. I was told to expect an appointment in due course. Nothing yet. Meanwhile I slap on the Sudocrem every morning otherwise I get so sore I bleed. I also wear panty liners. It doesn't, fortunately, happen very often, but it pays to be prepared!
PPS re the omeprazole. I did try stopping it for a few weeks as I never get gastric issues and never did. GP suggested it. It didn't make any difference to the diarrhoea though.
If you were not prone to gastric problems prior to taking pred (and the PPI) and you're currently taking only 5 mg pred, the simplest solution, and the one easiest for you to try out on your own, would be to taper off the omeprazole (following the suggestions of how to do that from others who've walked this path) without introducing anything else, other than perhaps minor dietary changes if you think some foods are a bit more problematic for you than others. If you can stomach naturally fermented foods, gradually introducing them, or increasing the variety you consume, may be helpful. Can you consult a qualified dietitian?
I'm certainly not going to suggest anything else right now, but I do think a healthy gut microbiome is very important for our general wellbeing and if that becomes disturbed by a medication then something must be done to help that microbiome recover. Good Luck!
I agree. I have been very aware of what I'm eating ever since I was diagnosed. I'm OK with kimchi and love kefir yoghurts, but don’t care for kombucha. Never been a great one for carbs, fortunately, but do have a penchant for white wine. There is a brand called “Not Guilty” which is a good alcohol free substitute. I generally have a protein breakfast, e.g. eggs & bacon, followed by fresh fruit and yoghurt and that might be where the problem lies. I am suspicious of raspberries and strawberries but will reintroduce them gradually once things have settled a bit. Oh, and an early morning banana with the Omeprazole half an hour before the preds. I definitely feel nauseous if I don’t have that banana or maybe a scrambled egg before the preds.
Sorry to hear this. You must feel dreadful. I had a nasty reaction to Omeprazole and was switched to Lansoprazole. No gut problems since then. They have to prescribe the cheapest medicine first. I don't know if Om. is cheaper than Lans., but it's certainly true of iron pills. I would get back to the GP and ask ...if the pills are making you sick they will want to sort that.
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naturally fermented foods, gradually introducing them, or increasing the variety you consume, may be helpful. Can you consult a qualified dietitian?
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