Steroids upsetting stomach help!

[Sandrebecca]

Hi , my mum is really struggling and I’m looking for suggestions. She has GCA and is on prednisone for it. It’s working well but is giving her severe sickness and diarrhoea. Diacalm isn’t working. Has anyone any suggestions or could tell me what worked for them? She is losing weight rapidly. All other investigations eg cameras down show nothing is wrong. Thank you x

[SnazzyD]

So sorry to hear that she’s got that on top of everything else. How long has she been on Pred for? What dose is she on now? Has she been given other meds too, particularly stomach protectors? How long has the upset been going on for?

[123-go]

So sorry to hear this. I'm guessing you're in the US because you say 'prednisone' not 'prednisolone' for the UK. Will you tell us how long your mother has been diagnosed and the dose of Pred she started with and what she is on now, please?-just for the record. How long has she had this sickness and diarrhoea?

What does her doctor say about her problems? Does she take any other medication? It appears that she has been left to deal with this herself. Stomach problems can be a side effect of Pred and GCA, I believe, can involve this type of symptom but I'm not totally sure. Others will advise. In any case, her symptoms sound quite severe and even though she has had some investigations, clearly there is something causing her symptoms - an infection perhaps- and more should be done for her. She shouldn't be left to self -medicate. I would push her doctor to do more for her.

Pred should be taken with a substantial breakfast. Many on this forum take plain yoghurt with Pred to avoid stomach upsets- a simple solution but may not solve your Mum's problem.

[Kendrew]

Hi Sandrebecca.So sorry your mum is suffering such severe digestive issues. Without knowing the dose your mum is on and how long she's been on pred though, it's hard to comment effectively. Other factors will influence an answer also, such as other meds and their possible interactions, how long your mum has had the sickness and diarrhoea and any previous history of digestive disturbances.

It's unusual and not particularly common for pred to cause such a strong reaction....even on higher doses.... although many people do experience some nausea and certainly indigestion and acid stomach type problems. I haven't come across anyone else experiencing such a side effect but that doesn't mean it can't occur.....I'm sure others will have more information on that one.

Perhaps you could give us a little more information so we can offer you a more helpful response.

[Sandrebecca in reply to Kendrew]

Thank you! She has tapered down from 60 to 3. She is on no other medication and is otherwise healthy x

[DorsetLady PMRGCAuk volunteer]

As others have said we need a bit more info please - particularly on any other medication (not prescribed for her GCA) or supplements she may be taking....they could be partially causing the issues.

As much information as you can give us, will help us answer.

[Sandrebecca in reply to DorsetLady]

Thank you! She has tapered down from 60 to 3. She is on no other medication and is otherwise healthy x

[DorsetLady PMRGCAuk volunteer in reply to Sandrebecca]

Bit bemused by that, if it is caused by the steroids then would have expected it to have eased at such a low dose.As she has had internal investigations and they have ruled out other things, has she had blood tests as well?

[PMRpro Ambassador]

Is she on any other medications besides the pred?

[Sandrebecca in reply to PMRpro]

Thank you! She has tapered down from 60 to 3. She is on no other medication and is otherwise healthy x

[PMRpro Ambassador in reply to Sandrebecca]

Cameras DOWN don't appear to me to be the right approach Have they done a colonoscopy? Or stool cultures?

[Sandrebecca in reply to PMRpro]

Yep cameras down and up, blood tests and stool samples. All clear x

[PMRpro Ambassador in reply to Sandrebecca]

How strange.

[Kendrew]

Seems a little odd and although I'm not a doctor I can't think the pred can be the sole cause of the problem. What's the time frame for her tapering from 60mg down to 3mg?

[Sandrebecca in reply to Kendrew]

18 months. X

[Kendrew in reply to Sandrebecca]

I know your mum has undergone tests to rule out other possible conditions, but I still think there's probably something else going on here.....and by that, I don't mean anything sinister but some other underlying digestive issue that's possibly being aggravated by the pred. It may be an intolerance to a certain food type that's evolved or the aggravation of a previously & maybe undiagnosed dormant condition such as diverticulitis......my sister has this and sickness and diarrhoea can be frequent when triggered by unexpected 'add ons'. Your mum may be allergic to the medication or she may have something else going on that's completely unrelated....such as inflamed gall bladder, gastritis. Whatever is going on, I think it requires further investigations, particularly as she's losing weight! I'm assuming she hasn't had the sickness and diarrhoea for the full 18mths?

[HeronNS]

If your doctor hasn't found anything it sounds like she should be referred to a specialist if this has been going on long enough for her to be losing too much weight. The medication she's tried isn't really intended for anything other than short term relief unless under the direction of a physician for specific disorders, like IBS.

I wonder if the inflammation of GCA is still present somewhere in her system and an increase in prednisone would help? I suggest this because before I was diagnosed with PMR I had a couple of episodes when it seemed my bowels turned to water. I had no other digestive symptoms and each time they were a one-off and I was better the next day. I was diagnosed six years ago and been on pred since and have had no further issues, but I did not ever have to take a GCA level dose. It was later that I made the connection with untreated PMR. Of course if she's suffered this symptom even when on much higher doses of pred, ignore what I've just written!

[Sandrebecca in reply to HeronNS]

That’s very useful thank you x

[Smokygirl]

I get this if I eat anything at all containing artificial sweetners. They really make me ill. Perhaps get her to check the ingredients of everything she eats, it is surprising what items have them in!

Also porridge does the same!

[Sandrebecca in reply to Smokygirl]

Thank you !

[S4ndy]

Hi Sandra, just a thought but has your mum been anxious over the time she has been on Pred? I wonder if she has developed IBS. Was this discussed when she had her investigations. As a long term IBS sufferer myself I found my digestive system was badly affected when I was put on Pred. I also got an increase in anxiety. So, at the recommendation of my gastroenterologist I did the FODMAP elimination diet and then reintroduced things slowly. I now know what sets off my IBS and I've been able to keep it controlled. Might be worth a chat with her gp. Maybe if there is a suspicion of IBS then they may offer her some medication such as a low dose of Amitriptyline to help. Hope you find a solution soon, best wishes to both of you x

[Mikb]

She could be Canadian where we say prednisone but use british spelling.

[Sandrebecca]

I’m British but apparently can’t spell 😊🤣. Very much appreciating all the advice on here. Thank you for everyone’s suggestions. I’m going to pass them on to my mum and hopefully discuss with her doctors too x