Diarrhoea : I would appreciate any tips for... - PMRGCAuk

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Diarrhoea

Donaloge profile image
49 Replies

I would appreciate any tips for managing diarrhoea brought on, presumably, by prednisolone.

Thank you.

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Donaloge profile image
Donaloge
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49 Replies
SnazzyD profile image
SnazzyD

Hello, can you say what dose you’re on and a bit more about what’s happening with you and the diarrhoea which can mean different things to different people.

Donaloge profile image
Donaloge in reply to SnazzyD

Hi,

Thanks for your response.

I am on 8mg having started in October on 15mg.

The diarrhoea began after coming down to 8mg.

When it started it was infrequent, maybe once a week. It seems to be coming more frequent.

It starts with discomfort in the bowel with an urgent need to empty. The output is quite watery and plentiful. I may have to go twice.

I hope that answers your question.

John

SnazzyD profile image
SnazzyD in reply to Donaloge

Any change in bowel habit needs to be assessed really to work which of the many causes it could be before pointing to Pred. Meanwhile keep a diary of when, how much, colour, smell, food intake, timing after food, other symptoms that have arrived. I’d call your GP or 111, not least because you may not be absorbing Pred well and might risk acute adrenal insufficiency. Loose stroll is also a symptom if adrenal insufficiency but really you need a proper opinion.

Donaloge profile image
Donaloge in reply to SnazzyD

Thank you for your advice.

John

PMRpro profile image
PMRproAmbassador

If it really were the pred, then I would have expected it to happen sooner and at higher doses. With such a recent start on pred, I wouldn't suspect it was signalling adrenal insufficiency as you reduce the dose but never say never.

However, whatever the assumed cause, any change in bowel habit should be reported to the GP and investigated asap. As Snazzy suggests, keep a record and you might find the Bristol Stool chart useful for reporting consistency as it is an internationally recognised scale:

continence.org.au/bristol-s...

What other medications did you start on when put on pred? Are you on a PPI (omeprazole or another stomach drug ending in - azole)?

Donaloge profile image
Donaloge in reply to PMRpro

Hi. Thanks for your suggestions. I take 70mg of alendronic acid weekly, And 30mg of Lansopazole and 1000iu vitamin D3 daily.

PMRpro profile image
PMRproAmbassador in reply to Donaloge

I would suspect that either the alendronic acid or the lansoprazole may be causing the gut problem. The PPIs in particular can cause some very unpleasant gut effects and they don't always start immediately but build up. I would ask if you can try famotidine or the like - different mechanism, different and usually fewer side effects and see if that improves things. Strange when you are supposedly taking the lansoprazole to "protect your stomach" but they can be horrible!

Donaloge profile image
Donaloge in reply to PMRpro

Thank you. That seems plausible.

Countrykitten profile image
Countrykitten in reply to PMRpro

Lansoprazole gave me horrific gut pain and explosive diarrhoea. (On 30mg) Changed to Omeprazole. Still suffering severe cramps and bloating so tapering down to nothing (currently on 20mg) and intending to go back to private Rheumatologist for injections. I can't wear anything around my waist because of pain and swelling.

Donaloge profile image
Donaloge in reply to Countrykitten

Thank you.

PMRpro profile image
PMRproAmbassador in reply to Countrykitten

Ask for an H2 antagonist - famotidine or cimetidine these days. Different mechanism so different side effects but rarely many

Louiseiw profile image
Louiseiw in reply to Donaloge

I suspect the alendronic acid is the culprit. When I started on Methotrexate I had the same gut problems, but it settled once I.stopped the Alendronic Acid. Definitely speak to nurse or consultant

Donaloge profile image
Donaloge in reply to Louiseiw

Thank you. I am waiting to hear from the nurse. However, if I stop the alendronic acid what will that mean for my bones?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Donaloge

There are other options if the AA is the culprit - but you can stop it for a week or two initially to see if it is. Maybe have a look at he the ROS webpage or ring helpline - theros.org.uk/

But you really need to find the cause….

Donaloge profile image
Donaloge in reply to DorsetLady

Thank you.

PMRpro profile image
PMRproAmbassador in reply to Donaloge

In the short term, nothing so it is fine to drop it for a few weeks to see if it resolves the problem. They have this (to me) appalling habit of handing out everything they want you to take "just in case" at the start instead of introducing things one at a time so that you have a fighting chance of identifying what causes what side effects, I've been on pred for over 13 years and in that time took only 4 AA tablets before deciding to wait for dexascan results to see if I really needed it, I didn't and have never taken another, Last time we looked a couple of years ago my bone density was very little different from the start.

Donaloge profile image
Donaloge in reply to PMRpro

Unfortunately my scan showed osteoporosis.

PMRpro profile image
PMRproAmbassador in reply to Donaloge

What were the readings? There are people on the forum whose doctors told them it showed osteoporosis but proper examination showed it was osteopenia which is not the same thing. However - not taking AA for a few weeks will do nothing. You have had a dental check in case anything invasive needs sorting first haven't you? Many dentists won't touch you if you are on any bisphosphonates.

Miserere profile image
Miserere in reply to PMRpro

Does that mean that you don't need to take AA with osteopenia? My dexa scan showed osteopenia and the GP immediately prescribed AA.

PMRpro profile image
PMRproAmbassador in reply to Miserere

It depends on the readings - osteopenia is a broad range and goes from marginally under normal to marginally above osteopenia. I am classed as having osteopenia but only just in the range so I never took more AA. Donalogue is borderline osteoporosis, even I would consider something.

Miserere profile image
Miserere in reply to PMRpro

Have found scores from 2021 - neck -1.5, lumbar spine -1.1 and hip 0.6. Should I be taking calcium? My GP has never recommended any supplementation. I do take 2000mg vitamin D3 with K2. I don't eat much dairy as Sarah Myhill advises against it. I can't walk very far or exercise much at the moment due to knee injury so can't do much weight bearing. I do wish GPs would treat patients as adults and not keep diagnoses etc. a secret - at least sometimes that's how it feels. I know mine are particularly bad and we have just one locum in the surgery - no sign of that changing any time soon and appointments are almost impossible, so I see a practice nurse when necessary. They seem determined that the knee problem is OA although it's not inflamed or very swollen at all and I can fully flex and bend it. It's so frustrating at the moment trying to deal with anyone medical. Sorry, I am moaning.

PMRpro profile image
PMRproAmbassador in reply to Miserere

Everyone on pred should be told to take calcium and vit D supplements. The supplements are quite low in vit D and a lot of experts are of the opinion the vit D is essential and calcium depends to some extent on your diet. I took calcium for some years but gave up because they were causing cystitis symptoms due to grit forming. It doesn't seem to have made much difference relying on diet but I do take 4000 IU vit D - without it my blood level falls steadily.

Not a moan - seems a universal problem in the UK. I can see my GP here - same day and in person!

HeronNS profile image
HeronNS in reply to Miserere

I was going to be prescribed AA also but I refused it, having done quite a lot of reading. The reason was because of total risk factors, pred being only one. Others were age, and a previous fracture (which was caused by an accident and I've always disputed that it was caused by bone thinning). healthunlocked.com/pmrgcauk...

Donaloge profile image
Donaloge in reply to PMRpro

T score lumbar spine -2.4. Left femoral neck -2.6.

PMRpro profile image
PMRproAmbassador in reply to Donaloge

They are borderline so probably better to take something - though you could still improve things naturally.  HeronNS did. But AA isn't the only option. First you have to work out which is causing the trouble.

HeronNS profile image
HeronNS in reply to Donaloge

Have a look at these sites. One is my story, the other a link describing secondary causes of osteoporosis.

healthunlocked.com/pmrgcauk...

osteoporosis.ca/medical-con...

Louiseiw profile image
Louiseiw in reply to PMRpro

That's exactly what my gp did. I am still under the consultant. But my GP gave me AA and other meds. The nurse soon stopped all that

Blearyeyed profile image
Blearyeyed

You do need to speak to your GP. As others have said there could be various causes for your diarrhea and the timing of it beginning when you lowered your dose to 8 mg could be a coincidence.Did you have any change in diet , other supplements or medications or possibly have a mild infection around the time it began?

Whatever the reason , as it has been pointed out you may also not be absorbing the full dose of steroids at the moment as your system is emptying too quickly and this could lead to other symptoms or a flare in your PMR.

It would be good to remind the GP of this if it seems like you would have a delay in getting a phone or surgery appointment.

Donaloge profile image
Donaloge in reply to Blearyeyed

Thank you. It started before Christmas and before I came down to 8mg. But it has become more frequent recently. I am waiting for a call from a rheumatology nurse.

Broseley profile image
Broseley

I get frequent (weekly) diarrhoea and have yet to ascertain a cause. But I find taking psylium (a soluble fibre prebiotic) has virtually stopped it along with plenty of green leafy veg, rhubarb and prunes. (I did have it investigated and they found nothing wrong).

Donaloge profile image
Donaloge in reply to Broseley

Thank you. In what form do you take the psylium? I will try it.

Broseley profile image
Broseley in reply to Donaloge

I take the capsules. You need to drink plenty of water with them. My cousin in NZ was prescribed it but in the powder form which is very bulky and not pleasant.

Donaloge profile image
Donaloge in reply to Broseley

Thank you.

icu2 profile image
icu2

lots of sage advice but for your and your guts immediate relief i would suggest imodium. .

Donaloge profile image
Donaloge in reply to icu2

Thank you. I have been taking Imodium, together with a hydrating drink.

icu2 profile image
icu2 in reply to Donaloge

any relief?

Donaloge profile image
Donaloge in reply to icu2

Yes. It usually happens first thing in the morning. The Imodium is a precaution if I'm going out and won't have easy access to a toilet. I would probably be alright without it but I don't want to take a chance.

icu2 profile image
icu2 in reply to Donaloge

good planning. did the same . always have a supply on hand, in car, in purse. troubled for years with this. proctologist ( after scopes and such showed no anomalies )suggested an antidepressant…he put it down to stress. while i didn’t feel stressed or overly anxious i accepted the medication theory and never looked back. gp always said “ the gut is your little brain. it knows what’s happening before the rest of you figures it out”. took it for years without issue and finally stopped eons ago. and i have been fine except for an occasional seemingly unprovoked attack- hence the emergency dose in purse or car.

good luck

Broseley profile image
Broseley in reply to Donaloge

Trouble is, imodium paralyses your gut (temporarily) and can give you cramps and constipation. It's great if you have to go out, but I think I would be reluctant to take it as a precaution. I keep a supply on hand too, everywhere I go! I often get attacks the next morning after I eat out. Not good when you're on holiday.

Donaloge profile image
Donaloge in reply to Broseley

It can be the lesser of the two evils. I use it no more than is necessary.

Louiseiw profile image
Louiseiw in reply to Donaloge

After almost a year of the meds giving me diarrhoea I fid the dose of Immodium tends to stop it. Just to clarify when I first started Methotrexate I had diarrhoea daily so switched to self injection and only get it once a week and I can almost predict what day and time it happens!

Donaloge profile image
Donaloge in reply to Louiseiw

Imodium does work for me but I'd rather not have to use it frequently. And at present the diarrhoea is every day without it.

I will be seeing the nurse consultant on Monday and I'm hoping she will be able to help.

Jayveedee profile image
Jayveedee

I had chronic diarrhoea while on Prednisolone and had a colonoscopy which was clear. I didn’t think it could be my medication as I had been taking it for a few months but then I discovered this article about Lansoprazole causing diarrhoea after a a few months. I stopped taking it and the diarrhoea stopped the next day. I took the article to my doctor and the surgeon who performed the colonoscopy. I never took it again and luckily now off Prednisolone as well.

Medical
PMRpro profile image
PMRproAmbassador in reply to Jayveedee

Is this the link for your screen shot?

sciencedaily.com/releases/2...

If not - could you give it please?

Jayveedee profile image
Jayveedee in reply to PMRpro

Yes that looks like it, thank you. I did get the information from this site but just took a screen shot to take to my doctor.

PMRpro profile image
PMRproAmbassador in reply to Jayveedee

The article says it is rare - yet again I suspect it isn't anything like as rare as they claim but when it is suggested they get all up in arms and say it isn't. All the more complex because it isn't an immediate reaction sometimes. Having a link to "proper" info is always handy for the sceptical doctor

Jayveedee profile image
Jayveedee in reply to PMRpro

I honestly don’t know what I would have done if I hadn’t found that article here. With all the tests I’d had plus the colonoscopy it must have lasted 3 months when I didn’t dare leave the house! It was scary! The day after I stopped the Lansoprazole it completely stopped! I do know lots of people who take it with no problem but I recommend anyone with those symptoms to stop it. You’ll soon know whether or not it is the culprit.

So thank you again for that article and also helping me come off the Prednisolone, couldn’t have done it without you.

PMRpro profile image
PMRproAmbassador in reply to Jayveedee

:)

Menno1525 profile image
Menno1525

I’ve been on Omeprazole for gastric issues for years without problems but have been getting the runs since starting on meds last week. Have put it down to the anti bios rather than the Pred but we’ll see what happens now I’ve finished the Clarithromycin (last dose yesterday) I regularly take a probiotic with my multi Vit and have live yoghurt for breakfast but perhaps should have upped it more whilst on anti bios. Hoping it will settle and I can get out of my danger pants but if not will report to Rheumy next week.

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