problems with diarrhoea : Hi I was diagnosed with... - PMRGCAuk

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problems with diarrhoea

Peony63 profile image
41 Replies

Hi

I was diagnosed with PMR late January this year and was prescribed Prednisolone, Adcal and Lansoprazle. I have been on these meds for a couple of months now and for just over a week I have been suffering with acute diarrhoea 4-5 times a day ! I saw the Dr yesterday and I have given in my 3 different stool samples for investigation.

It does seem to be getting worse no matter what I eat and I’m wondering if it’s the lansoprazole? My Dr thinks not as I’ve been taking it a while but I have read that it can upset you later on once it’s in your system.

Has anyone else experienced this ?

Thank you

thank

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Peony63 profile image
Peony63
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41 Replies
SnazzyD profile image
SnazzyD

Lanzoprazole and others in the proton pump family can cause gut issues. I couldn’t get on with them at all but it didn’t hit me immediately, so not sure about the doctor’s reasoning. I also found that calcium in Adcal doses gave me indigestion and bloating so I had to reduce the dose by buying my own supplements.

Peony63 profile image
Peony63 in reply toSnazzyD

Thank you for your quick reply.

I’m also worried about not getting any nutrients in my system but I’ll see what the samples reveal.

SnazzyD profile image
SnazzyD in reply toPeony63

Do you feel ill with it?

You could try asking for a non PPI like Famotidine as an experiment. They went out of fashion when PPI’s came along and work on Histamine 2 receptors instead. You can’t just stop PPI’s because of rebound acid.

Peony63 profile image
Peony63 in reply toSnazzyD

I don’t feel ill but am starting to feel tired and run down. I do get a very low sore tummy too but that doesn’t seem so bad at the mo.

SnazzyD profile image
SnazzyD in reply toPeony63

What dose of Pred are you on?

Peony63 profile image
Peony63 in reply toSnazzyD

I was on 15mg but just reduced to 12.5mg this week.

piglette profile image
piglette

You could try not using the lansoprazole for a couple of days and replacing it with yogurt and see if that helps. You will then know if it is the PPI or not.

Peony63 profile image
Peony63 in reply topiglette

Thank you, think I will try that.

Peony63 profile image
Peony63 in reply toPeony63

While I’m here, do you know how I stay logged in on this forum?

Every time I get an email I have to log in.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPeony63

I thinks it’s an HU issue -you aren’t the first to mention it this week -have a look at my reply to this recent post -

healthunlocked.com/pmrgcauk...

Not sure what happened as original posted hasn’t replied! 😊

But if all else fails - you need to contact HU support desk

piglette profile image
piglette in reply toPeony63

It happens to me intermittently.

tangocharlie profile image
tangocharlie in reply topiglette

I'd say plain food or whole milk rather than yoghert as the enzymes in yoghert can also trigger an already upset stomach - I can't tolerate anything fermented with my sensitive stomach

PMRpro profile image
PMRproAmbassador

Not all adverse drug reactions happen immediately which can make it difficult to identify - but the doctor should know that and not dismiss it. Calcium can also be a culprit but more often the other way.

I'd get some famotidine/Pepcid OTC and use it instead of the famotidine and see that helps. If it doesn't drop the calcium for week or so, But don't change 2 things at the same time or you won't know what made a difference!

Nonameme profile image
Nonameme in reply toPMRpro

Hi unfortunately I to had tremendous problems with all PPI’s and it took over 5 years and lots of private consultations to finally get my answer. I have recently been put on Famatodine when starting my pred journey and that kicked off within 2 days! At times I would be bowel incontinent with no warning twice in the supermarket was enough to make me housebound. I have a hiatus hernia and gps insisted I HAD to take PPI’ s or suffer the consequences. There was no way I was ever going to take them again so I am suffering the (manageable) consequences.

However since taking Pred my type 2 diabetes is now making my blood sugars very high and again against my will I have been put on Metformin as well as insulin. Two days was enough to start things off again so have now discontinued Metformin.

GP is not agree with my insistence that these drugs cause these awful symptoms and just keep prescribing them. I don,t collect them and they seem not to have worked out I don,t take them!

Also just as an aside on a recent trip to USA I bought Pepto instead of Gaviscon. I was extremely unwell and bathroom bound for 3 weeks and it was only upon being home I happen to read that Pepto can make your stool and saliver black and tarry which is what I was suffering. I thought I was passing ‘coffee ground” motion and saliva and had concluded I was bleeding internally so had a terrifying 3 weeks away from home

PMRpro profile image
PMRproAmbassador in reply toNonameme

Here I'm going to introduce one of the very disputed concepts on the forum! Are they sure you have PMR - do your symptoms respond well to pred? Fibro and PMR can present looking VERY alike and the primary differential is that fibro doesn't improve with pred, PMR does - BUT you can have both. And a characteristic of fibro is extreme intolerance of many medications.

Like my bugbear about fibro/PMR, I have another when doctors refuse to accept that some people just do not tolerate medications. If, on balance, something coincides with starting a medication and improves without it, that is enough to say maybe there is something in the theory. And then you have to sit down and consider the options. Not just tell the patient they are talking rubbish and gaslight them - because as the Cambridge study published recently showed, that can cause untold damage.

Nonameme profile image
Nonameme in reply toPMRpro

Thank you for this information and chain of thought. I feel I have been experiencing PMR Symptoms for over five years but was repeatedly diagnosed with “all in your head”syndrome 😠. Around July I visited Specsavers who when listening to my history and alone with their diagnosed vision problems sent me to GP with probable GCA. Luckily I had been lurking around this forum so knew about this. I had actually asked gp back in Feb 2024 if I could have PMR and she just laughed and said that’s nasty you don’t want that. Onward a week and got firm confirmation following hospital scan etc. that I did in fact have GCA and started treatment at 60mg. Within 2 days I could turn over in bed and most aches and pains diminished and have stayed away thus far. Ophthalmologist referred me urgently to Rheumatologist in December siting investigation for PMR etc but so far I have heard nothing. So having read your post should I now begin researching that I have Fibromyalgia instead of/ as well as PMR.

Thank you

PMRpro profile image
PMRproAmbassador in reply toNonameme

Did you see the post about the Cambridge study recently? "All in your head" syndrome indeed. Both IS always a consideration - there are quite a few on the forum who have both and can tell which is which.

Fatsiajaponica profile image
Fatsiajaponica

Hi, yes, the PPI gave me awful diarrhoea, took a while for this to happen and for me to work it out. Stopped the PPI and no diarrhoea. I now take the pred with yoghurt and have had no stomach issues. At one of our latest charity zooms the gastro chap had indicated that 10mgs and below there is no real need to take a PPI, I'm guessing as long as you don't have any other issues which would indicate the needfor one. Good luck and hope it resolves itself very quickly.

Peony63 profile image
Peony63 in reply toFatsiajaponica

Thank you so much ☺️.

So much help and support here.

Is yoghurt enough though to protect your stomach over the meds? Taking yoghurt would be much more preferable than taking meds.

PMRpro profile image
PMRproAmbassador in reply toPeony63

Depends what you are considering - in some patients there isn't a problem and food/yoghurt in particular is enough. But the pred also has a systemic effect on cells in the stomach wall and that isn't protected against by food of any sort - there the production of acid must be suppressed to avoid damage.

Peony63 profile image
Peony63 in reply toPMRpro

Thank you

Pinkcrocs profile image
Pinkcrocs in reply toPeony63

Rightly or wrongly I do not take adcal or omeprazole. I take pred with yoghurt. I eat yeo valley natural organic whole milk yoghurt twice a day.

Broseley profile image
Broseley in reply toFatsiajaponica

May I ask, how long after stopping the PPI did the diarrhoea stop? I have it also, and I tried stopping the PPI for a couple of weeks but it made no difference.

Fatsiajaponica profile image
Fatsiajaponica in reply toBroseley

I think it was quite quickly, certainly no more than a day or two. I hope you find the culprit soon, it is rather debilitating.

Broseley profile image
Broseley in reply toFatsiajaponica

Yes it's a nuisance. My GP referred me to an incontinence physio, who has been brilliant and in turn referred me to a dietitian. It's all been very helpful but so far the only thing that works is imodium.

Fatsiajaponica profile image
Fatsiajaponica in reply toBroseley

You have reminded me that I used imodium initially until it settled down, it was a godsend.

Lonsdalelass profile image
Lonsdalelass

Also, just to add if it hasn't already been mentioned, ask for ENTERIC COATED pred rather than the plain uncoated ones, as these help to protect the stomach. In my case, I asked for these and took them, then didn't need to take the lansoprazole. One less med in your system!

Karendeena profile image
Karendeena

Absolutely, Lansoprazole did this to me and I never ever got my digestive system back to normal and that was 5 years ago!! I tried others but they all did the same. I was changed to Famotidine which was better for the rest of the time I was on prednisolone. It was a few months for me before it started.

Windy183 profile image
Windy183

Yes! I persevered as my GP requested but when I stopped taking Lansoprazole the diarrhoea stopped. I haven’t taken it since. I appreciate that these drugs are prescribed for good reason but when they restrict your life to the point where you can’t go out then a choice has to be made.

Viv54 profile image
Viv54

Hi a couple of weeks ago my DR changed some of my tablets ,after only one day of taking the Lanzoprazole , i had chronic diarrhoea ! It was awful and the pains in my stomach were horrendous . I stopped them straight away. I felt awful the next day then back to normal. Hope this helps.

Peony63 profile image
Peony63 in reply toViv54

Thank you so much. All the replies and information has been so helpful and eye opening. I’m not taking one today and will see how it goes. I’m a bit worried as have a feeling in my gut and throat like I’ve got something stuck in there but it could be stress.

I really appreciate all your answers xx

I

Viv54 profile image
Viv54 in reply toPeony63

I would also like to point out that in the leaflet with the tablets it says diarrhea it a side affect , I'm sure lots of people go to the Dr after having this trouble with this .I don't understand why do many Drs don't get it ! Sorry rant over ,it just makes me cross when you are in such discomfort that they don't think out of the box ! Sorry rant over, glad to be of help.

Peony63 profile image
Peony63 in reply toViv54

I know 🙁. My Dr thinks that because I’ve been on it for a couple of months it can’t be that but I’m not so sure. I haven’t taken it today and had yoghurt as suggested on here but I’m still suffering this morning but it’s early doors I know. I will try it for a couple of days to see if it makes a difference but I do worry about my stomach not being protected.

Thank you for your reply x

Classicalgeeze profile image
Classicalgeeze

I too had a very similar experience. About a month after diagnosis of PMR and commencing prednisolone I had an episode of chronic diarrhoea that lasted for two weeks. The only way I had any control of the symptoms was by not eating. I lost 7kg in weight in two weeks and I thought I was on my way out. Poo samples didn’t show any infection but my GP in desperation gave me antibiotics which worked. After many tests and a colonoscopy no cause was ever found. I was on Omeprazole 20mg and this has been reduced to 10mg. I have been on omeprazole for years so I don’t think it was a culprit. So the whole thing is a complete mystery. It seems too much of a coincidence that this happened to me so soon after commencing steroids. My theory is that the steroids reduced my immune system and that there was infection that never got picked up by the poo tests. This all happened June of 2024 and I’ve been ok since. I do feel for you as it was a worrying time for me and I hope you get sorted out quickly

S4ndy profile image
S4ndy

I was on Pantoprazole for quite a few years. I started having constant runny stools and stomach pain. I saw a Gastroenterologist who did a barrage of tests including colonoscopy and gastroscopy. The only thing that was found was a bit of inflammation in the stomach. He took me off of ppi and put me on H2i Ranitidine. The gastritis cleared up and no more diarrhea. I have not taken Pantoprazole or any ppi again. Now take cemitine which is another H2 inhibitor. I also take my prednisolone with yoghurt.

CaraDee profile image
CaraDee

I had uncontrolable, chronic diarrhoea when I was on 30mg Lansoprazole. It was changed to 15mg, which improved things a lot.

ChrisBeeLoop profile image
ChrisBeeLoop

I feel for you! I had exactly the same with Omeprazole. It crept up on me gradually so I began to think it was a function of old age! I too had the three stool samples and subsequently a blood test which showed an abnormally high level of creatinine: kidney problems. My doctor immediately took me off Omeprazole and said he didn’t think I needed an alternative as my Pred dose was only 5mg. Huge improvement in gut problems and kidneys seem to be getting back to normal. I am due a blood test about now. I always have something to eat when I get up, usually a banana, half an hour before the Pred. He also sent me for an ultra sound scan which looked OK as it was several weeks after I stopped the Omeprazole.

Peony63 profile image
Peony63 in reply toChrisBeeLoop

Oh that sounds promising ! Thank you so much for your reply. Just so worried something serious is afoot.

So grateful for all your stores ☺️

ChrisBeeLoop profile image
ChrisBeeLoop

I forgot to mention I also had four or five really nasty episodes of vomiting and diahorrea, like overnight norovirus. That's what finally got me to the doctor. No more problems since ditching the Omeprazole in October.

BTW, did you say you were tapering the Pred from 12.5 to 10 this week? ( Sorry, I can’t find your original post.). It's none of my business, but that is a very big drop, equivalent to 20%. I would suggest going much more slowly, I think 10% is the general recommendation but I have crept down very slowly by ½ and ¼ mg at a time.

Good luck with your journey.

Peony63 profile image
Peony63 in reply toChrisBeeLoop

I was started on 15mg of pred and have just reduced to 12.5mg this week.

Purplegloss profile image
Purplegloss

In my experience Adcal was the problem with both sickness and diarrhoea sometimes at the same time, and it went on for weeks before I found out what it was by simply stopping taking it, so this could be your problem as well.

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