Sick Day Rules

[Classicalgeeze]

Just want to have a bit of a rant please if you’re sitting comfortably.

I was diagnosed with PMR in July 2024 and commenced on 15mg Prednisolone. Coincidence or not, within 2 weeks of starting Pred I had major diarrhoea attack for 14 days and lost 7kg in weight. No infection was evident. This prompted a CT scan and colonoscopy with biopsies but no malignancy was found and they ruled out IBD. All a bit of a mystery. I’ve recovered ok and put the weigh back on….. and a bit more! I am now on 7mg of Pred and have recently had a further episode of diarrhoea but not as severe as before. GP has been very unhelpful this time and says they’ve done all the tests it must be IBS. In doing my own research to try and find an explanation for my problems I was gob smacked to come across the ‘sick day rules’ which I’ve not heard of before. If i had been told about this I might not have been so poorly. Should my GP have given me information leaflet when I commenced Pred? Should I have increased Pred prior to having colonoscopy? I guess they would argue that it’s my responsibility to point out that I’m on steroids. In my research I’ve not found any link between PMR, steroids and diarrhoea so perhaps it is IBS and I just need to accept it. Rant over and I feel much better now 😊 If you’ve read this far I thank you for sticking with it and please check out the sick day rules if like me you’re blissfully unaware of them

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this, but before colonoscopy all your medication should have been discussed with the medical team and the fact that you were on steroids taken into account.

If you had mentioned all the above on here, we may well have been able to give you advice earlier.

Just for info, we have info on SDR in the FAQs.

[SheffieldJane]

I was also unaware of the sick day rules when this began. In fact most of my knowledge comes from this forum, there was no explanatory leaflet or any such thing but I landed lucky when I got to my Rheumatologist. I feel disconcerted when my GP gets annoyed when her hunches turn out to be off the mark now we seem to be dealing the fall out from long term steroid use with hypertension and T2 Diabetes. I think IBS has become a kind of generic term digestive issues that call for the Endosopy, Colonoscopy, and the camera Endoscopy. I suspect the gut trouble I get is from long term Prednisolone use. I saw my Endocrinologist yesterday , when told of my long Covid diagnosis he emphasised that it is vitally important that I increase my 4.5 mg dose to 5 mg in the morning and 5 mg in the evening each time the illness flares up which occurs with Long Coved. At this rate I feel as if I will never get off Pred. ( also ranting).

[Fishface21]

I think the Sick Day Rules are a bit over dramatic, I followed them when I had a really bad bout of sickness and diarrhoea - taking extra, sicking it up again, phoning 111 etc. Eventually (this is cutting a very long story short including a night in a&e and discussions with rheumy nurse and pharmacy) I was told that you only need to take more if you are very sick within an hour of taking Pred which isn't what the Rules say. When I was tapering Pred from 30mg I got explosive diarrhoea off and on over many months (I am currently on 10mg). Like you they could find no infection and I think it's more the case that the Pred has made my digestion super sensitive. It has been better since avoiding anything processed and any additive ending in gum, guar gum in particular which is in so many things even tinned soup!

[PMRpro Ambassador in reply to Fishface21]

" was told that you only need to take more if you are very sick within an hour of taking Pred"

I fear they are totally misinformed. If you are a long term steroid patient you have Addison's disease secondary to long term corticosteroid use. Your body is unable to provide the spike of cortisol that it would normally produce when under stress of any sort and that includes illness. It is true it isn't just for a cold but there are illnesses where it is called for. Ask people on this forum who HAVE experienced an adrenal crisis - SnazzyD and tangocharlie spring to mind.

The Sick Day Rules were developed to avoid patients with adrenal insufficiency ending up being seriously ill - an adrenal crisis can be life-threatening.

addisonsdisease.org.uk/newl...

The trouble is, too many HCPs don't associate long term use of steroids and adrenal insufficiency with Addison'd disease. The cause is different - the effect is the same. Someone said the other day that a consultant in a London hospital told them to mention Addison's, not adrenal insufficiency, because non-specialists don't understand the risks of long term pred.

The new red emergency steroid card was supposed to address the problem, first issued during Covid, but unfortunately the education programme for the HCPs doesn't appear to have filtered down.

[Classicalgeeze in reply to Fishface21]

Fascinating that you mentioned soup as the last thing I ate before the floodgates opened was a tin of carrot and coriander soup!

[AyJayBass in reply to Classicalgeeze]

Home made soup is easy to make. Make a batch and freeze in 500ml containers. Or make it fresh each time if you have a soup maker.

[PMRpro Ambassador in reply to AyJayBass]

I took my soupmaker over to my daughter in Scotland as it was a bit wasted here - and have discovered how simple soup is with an airfryer! I roast enough veggies in it, tip it in a saucepan with some water/stock and wizz it with an immersion blender! Easier to wash than the soupmaker - which seems to be a UK thing. Never heard of them here but the other daughter sent one when her father was ill but had developed a taste for soup while on the palliative unit.

[AyJayBass in reply to PMRpro]

I love my air fryer! Especially good for single people. I use it most days.

[PMRpro Ambassador in reply to AyJayBass]

Isn't it!! I put a bed of veg in suitable chunks, lay a slice of FROZEN meat on top, 15 mins at 200C and I have a perfectly cooked dinner to just tip on the plate. Works for steak, turkey schnitzel (sliced breast), lamb chops. The timing depends on how you like your steak obviously and some veg need 5-10 mins before adding the meat. But a piece of rump steak that is an inch thick and an inch wide crosssection is perfect at 15 min - well crusty on the outside and pink in the middle. I buy meat the thickness I want and cut it into 90-100g portions and freeze it. Turkey is the fastest obviously when only 1/2in thick, 12 mins is plenty. Good meaty aausages are great too.

[Fishface21]

Thanks PMRpro, I was taken seriously because I kept showing everyone the SDRules and emphasising adrenal insufficiency but you are right a lot of HCP don't seem to have grasped it. The worst offenders were in the rheumatology department that issued them to me! It's hard to know what the best approach is really.

[PMRpro Ambassador in reply to Fishface21]

I know. The trouble is, we know, we have done our homework so are the dreaded Expert Patient. It was an NHS initiative but failed when the expert patient who was entirely aware of a problem as well as how THEIR body responded came up against the HCP who thought they knew it all and felt threatened. There was even a study done about it. HCPs can be very precious when they aren't entirely confident - or are overconfident in their abilities.

[Fishface21 in reply to PMRpro]

I suppose the last 30/40 years has seen a huge sea change away from paternalistic medicine with the doctor being the expert and only telling you what he (and it was usually a he) thought you needed to know. They used to keep it from you when it was "bad news" , seems unbelievable nowadays. Perhaps things will change eventually.

[PMRpro Ambassador in reply to Fishface21]

It is patchy though - still awfully paternalistic here with some, usually the less good doctors and even a few women. I have a batch of very enlightened medics who all treat me as an equal. But I get the impression the UK is actually getting worse in some respects. I have my own theory about that but can't say it here ...

[Stills in reply to PMRpro]

It is getting worse without question and I can’t understand why

[PMRpro Ambassador in reply to Stills]

As I say - I have an opinion there ...

[Excelsior80 in reply to Stills]

i'd guess partly funding and political interference, reorganisations etc .... I read that though the data on aging population needing more medical care was known, NHS funding wasnt increased to match it Then you get stress, and people leaving, and understaffing, and more stress .... though I have to say so far Ive had good treatment myself, and my family too.

[CaraDee]

Hello

Could I ask whether you are on PPIs?

I was given Lansoprazole 30mg daily at the beginning of my Pred journey, and ended up with extreme constant diarrhoea.

I changed to 15mg and things settled down a lot.

[Classicalgeeze in reply to CaraDee]

Thanks for asking Cara, I’m on Omeprazole 20mg but have been on it prior to PMR diagnosis so don’t think it’s the culprit

[ChrisBeeLoop in reply to Classicalgeeze]

Ah! I was going to ask about Omeprazole. It definitely caused me major intestinal problems. I have been off it for four weeks now and my leaky bowels seem back to normal. fingers crossed!

[PMRpro Ambassador in reply to ChrisBeeLoop]

Not uncommon!! Ironic really - gut protection that gives you the runs!

[marionofnorwich]

Were you given supplementary medication such as Lansaprozole as a stomach protector or Alendronic Acid as bone protection? I find that both affect my gut system (negatively). I get loose movements with them. I did once have bad diarrhoea for about 10 days but we took that to be campylobacter though was never tested so don't rule out an incidental stomach bug that can last a lot longer than 24 hours. I wasn't told about sick day rules either and got much worse after a bout of Covid which made me search around and that's when I found this forum, two years after PMR started

[Classicalgeeze in reply to marionofnorwich]

Thanks Marion, I was already on Omeprazole prior to PMR diagnosis and haven’t been prescribed alendronic acid so they can’t be the culprits. I’m sure that I had an infection but the tests came back clear so it’s all a bit of a mystery