chronic diarrhoea

[lennysmummy]

I reduced to 5mg from 5.5 on 25/06. After about a week had intense nausea, headache for 2 days. From last week I’ve had chronic diarrhoea and stomach cramps. Literally as soon as I eat they come on and I go again. Gp has said it would be nothing to do with tapering. Also said I didn’t need to add more steroids as my body would have absorbed them anyway. Taken a stool sample to check for any infection. What should I do? Light headed, weak and feel awful. He also said steroids could have caused diverticulitis.

[PMRpro Ambassador]

And lack of steroid could be causing adrenal insufficiency - and diarrhoea is a common symptom of that.

However - if you had a gut bug, they can result in a longer term form of IBS. My husband was diagnosed with it and he had similar symptoms but I can't remember further details.

[PMRpro Ambassador in reply to PMRpro]

This is a general info article

seattletimes.com/life/welln...

but there are loads of medical articles about it if you google "viral infection causing IBS"

[DorsetLady PMRGCAuk volunteer]

Not a lot you can do until you know what is causing it, part from keep hydrated [plain wter, sports drinks, some herbal teas] - so long as you are managing to keep your tablets in system long enough they will help.

Not sure he’s completely correct in saying it has nothing to do with tapering. Not directly related to your PMR probably , but you have tapered enough to make the adrenals struggle.. and all of those symptoms are related to adrenal insufficiency.

[lennysmummy in reply to DorsetLady]

Not sure how long it takes for stool testing to come back. 2 lots of antibiotics just in case but he also said “ they will probably give you diarrhoea “ head is so muzzy, no fever. It’s so hard to know the cause. Thank you 🙏

[agingfeminist]

once you get the results of your stool sample and know there isn't an infection, suggest to your doctor a short sharp dose of loperamide (you can buy it over the counter as Stop It). Follow the instructions carefully. I have found it magic when dealing with diarrhoea probably asociated to adrenal insufficiency.

[lennysmummy in reply to agingfeminist]

Yes I tried that but you can only take it for 2 days apparently. 🙈

[cranberryt in reply to lennysmummy]

Get doctors permission of course but mine says I can take it more often. I have long term issues and I can take it daily in conjunction with my colitis medication. I believe the risk of longer use is getting to constipated and not getting a proper diagnosis.

[lennysmummy in reply to cranberryt]

Thank you, I didn’t realise that.

[agingfeminist]

I am sorry it didn't work. Did it stop it at all and then return? Anyway this needs more thorough investigation...I know it is hard when you feel so weak but perhaps push to see a gastroenterologist.

Have you had a colonoscopy? diverticulosis (precursor to diverticulitis and caused by pred) shows up.

[Sophiestree]

Is it the same thing you eat that brings on the sudden urge to go to the loo. I have developed this problem with red meat. I rarely ate red meat before but occasionally would have mince or something and wham... off to the loo, so have cut that out completely now.

[lennysmummy in reply to Sophiestree]

Because I have bowel problems I stick to a horrible plain diet, literally salad, white meat, never eat red meat. And I eat fish. My diet is no different recently so I can’t even blame it on that. X

[Broseley]

Hi, I have similar issues. It comes and goes, today it's coming! Ask your GP for a calprotectin test. This shows inflammation in the gut. It's a stool test. Mine was high suggesting IBD. I also had a colonoscopy - normal but I had some polyps removed.

They can't find any reason for it. I've tried pre and probiotics. Walking seems to bring it on. It seems to be totally random and not related to my diet. I've not been offered any further help. They suggested a low FODMAP diet but that didn't help either. I have just had to learn to live with it.

Good luck with yours!

[lennysmummy in reply to Broseley]

Bless you. Well my sample went off yesterday so shall see if it shows anything. I did the Fodmap diet years ago… ( made it worse) I had a colonoscopy a few years ago but they had to abandon it as the scope wouldn’t go round as I also have a severe malformation of the vowels so had to do ct colonoscopy. I will see what the mri shows x

[Broseley in reply to lennysmummy]

Re not getting round: Depends on the doctor doing it. I had two, the first had no problems. The second couldn't get it round and gave up after half an hour saying I had a looped bowel. I Googled it, eventually found a site that says that women often have looped colons. The first doctor obviously had a better technique!

[PMRCanada]

I just finished the exact same drop (5.5-5) and have dealt with diarrhea at times, as well as headache and nausea. I believe it’s due to adrenal insufficiency (or diverticulitis flaring). I’ve had to double the length of my 7-week taper (to 14 weeks) and slowing things down has helped with those symptoms. Perhaps that approach would help you too when you taper next.

I plan to stay at 5mg for the remaining 6 weeks of the summer as this too seems to help alleviate the horrible adrenal insufficiency symptoms. The lower the slower.

Hope you get some insight to the cause, and some relief soon.

[lennysmummy in reply to PMRCanada]

Thank you. Both my consultant and Gp have said Pred wouldn’t cause this. I did think it was withdrawal to start but then as son as I’ve eaten, within half hour the stomach cramps start followed by Diarrhea. I went back on the Imodium yesterday and although I thought i would go again it halted it… let’s see what today brings. X

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

Have a look at this - it’s more info on secondary adrenal insufficiency- which is what both PMRpro and I have said is the likely culprit -

It goes into quite a lot of detail - but does explain that being on steroids long term causes the issue - and what the symptoms are. Something which your rheumatologist and GP don’t seem to have much knowledge of.

Don't get too concerned regarding comment on treatment etc… as you are on a tapering regime for your illness, your adrenals will start to work again - it’s just that in some case they are more sluggish and some patients suffer more.

nadf.us/secondary-adrenal-i...

This is also in the FAQ if you haven’t seen -

healthunlocked.com/pmrgcauk...

[lennysmummy in reply to DorsetLady]

Thank you for that. It was very interesting. I asked my consultant yesterday at what level they do a cortisol test, she said they don’t as the adrenals will be working fine now. As I say, if it’s adrenals then at least I know, if it’s something else then no idea. I have my bloods again Monday for esr and crp. They were crp 4 and esr 8 last month. I was even thinking of going up on steroids to see if symptoms ease but then if it’s not that I am increasing for nothing. X

[PMRpro Ambassador in reply to lennysmummy]

Which just illustrates the utter ignorance on her part, Prof Mackie in Leeds did a study with the endos there and they were really surprised at how many were adrenally insufficient and then how long it took for it to return, requiring a VERY slow taper to achieve it.

Increasing your pred WOULD improve it - BUT all that would do is postpone the evil day because you will have to get through it to persuade the adrenals and the whole rest of the set-up (the HPA axis, hypothalamus, pituitary, adrenals) to get going relaibly again. It isn't just the adrenals making cortisol, it is the control system bits too.

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

Eeek! And as PMRpro has said going up will help them - but only temporarily- and you still have to come back down… and it may all kick off again. So if you can, best to grind it out and get through it… with what you other meds etc you need to help.