Confusing 111 guidance on Sick day rules for prednisolone

[Dontwannabesick]

After all this time shielding, I'm a bit gutted that someone has 'got' me. Not felt well with cough/cold symptoms since Monday. I've been tapering off pred and am at 1.5 mg now. I looked up sick day rules relating to pred and on that advice I increased my dose yesterday to 10mg morning and 10mg evening. This morning felt loads better, however I heard one of our contacts was positive so took a LFT and it's positive. I called 111 for advice, as generally I don't feel too bad, but was surprised when he challenged me about increasing my pred as it will make me more vulnerable. He did agree with me that I should skip methotrexate injections until my symptoms go, but was adamant that I go back to 1.5 mg daily pred. Advice please oh learned ones.

[HeronNS]

This is from a thread (Different sick day rules for covid) which links from your post. You'll note that at least at the time the bulletin was published the advice was to increase dosage. In your case you are already testing positive, so the caveat that additional pred lowers your resistance, well that seem a bit beside the point now. I think steroids are used in treating covid symptoms.

leedsth.nhs.uk/assets/be1c3...

I'm sure there are others who've kept up on the latest recommendations who will be along in due course. Glad your pred increase helped you feel better. Get well soon!

[Dontwannabesick in reply to HeronNS]

Thanks for that HeronNS, those are the guidelines I used. I did challenge him a bit, and pointed out that I felt better today after upping my dosage yesterday, but he wasn't having it. Lst time I had a bad chest infection (just before Covid was acknowledged) the first thing my GP said was to increase my pred, so I'm sticking to them guns.

[HeronNS in reply to Dontwannabesick]

Glad you have a GP on your side. However what PMRpro says is the 20 mg is maximum for anyone taking pred over 10 mg. As you are only on 1.5 normally I guess that means you shouldn't stick to the 20 mg a day howitzer, although probably somewhat more than 3 mg is in order!

[Dontwannabesick in reply to HeronNS]

Unfortunately that good GP was just pre Covid. He's left now Just waiting call back from current GP.

[Nagswoman in reply to HeronNS]

Doc and rheumo told me to have a pack of preds for if I get any kind of chest infection. I believe that I was told 10mg a day but it may have been how I always had to take preds for bad asthma - 8 x 5mg tabs first day, 7 the next, 6 the next etc.

[PMRpro Ambassador]

Try your GP and remind them you are adrenally compromised, give them the link to the Sick Day Rules to read for themselves. Should have referred the 111 person to it too. The reason they were developed and the new Steroid Card was issued is because they found too many healthcare professionals weren't aware of the risk of adrenal crisis in long term steroid patients.

Actually - this is off the top of my head, but I think it says you should double your usual dose - up to a maximum of 20mg/day but that doesn't mean YOU need 20mg, it means that someone on more than 10mg would only increase to 20mg, so less than double THEIR dose.

I put up a link today about a study that finds being on pred for a rheumatic disorder or asthma seems to increase the risk of developing Long Covid - so that MAY have been what he was on about.

[Dontwannabesick in reply to PMRpro]

Thanks PMRpro, I will try them, but honestly it will be just for a laugh, all the good ones have left. The way I understood the Covid bit pages 7 and 8 I think is if you're under 10mg a day then go to 10 mg twice daily.

[PMRpro Ambassador in reply to Dontwannabesick]

Time to start training them then!!!! I wonder if 119 might be better for a query? Not that I know how that works either ...

[Dontwannabesick in reply to PMRpro]

First port of call was 119. Useless, just advice on vaccinations and no option to speak to anyone. BUT, I just phoned my GP surgery, and the receptionist is going to put in an urgent request to the doctor and phone me back. Not going to hold my breath though!)

[AliDeJ in reply to PMRpro]

What are the Sick Day Rules? Where do I find them please?

[PMRpro Ambassador in reply to AliDeJ]

The link is in the Pinned Posts and also in the FAQs. It is guidance developed by Leeds hospitals and departments for both patients and medical staff for patients who have been on long term corticosteroids.HeronNS also posted the link in the first reply to the thread

[AliDeJ in reply to PMRpro]

Thank you.

[PMRpro Ambassador in reply to Dontwannabesick]

Just had a look:

In section 05 The Sick Day Rules, Rule 1 says

"If you usually take less than 5mg

prednisolone daily, take 10mg daily

while unwell.

If you usually take 5-10mg daily,

double your usual dose"

So HIS instruction is wrong anyway - and as you say, the special Covid rules are to do what you have done and go up to 2x 10mg.

Of course, that was developed early in Covid when people hadn't been jabbed so they were likely to be poorly bunnies anyway. But I would definitely follow Rule 1 at the very least. There is stuff on page 12 to explain to doctors about the increase - for patients on 2-20mg who need to take 10mg 2x daily for 24 hour cover. So if a doctor questions it - give them the links that quotes.

[Dontwannabesick in reply to PMRpro]

Will do - watch this space, and thanks !🙂

[HeronNS in reply to PMRpro]

I noted this publication was due for review at a certain date, so I would assume if there had been any change re the covid protocol it would have appeared by now.

[PMRpro Ambassador in reply to HeronNS]

I wouldn't assume anything!!!!!

[PMRrunner]

I caught covid in February and when I spoke to my local hospital about antivirals the advice was not to take my weekly 15mg of methotrexate but to take my 5mg of prednisolone as normal. Fortunately I wasn't that ill so felt no need to query this advice.

[Dontwannabesick in reply to PMRrunner]

Yes, the one thing the 111 doctor agreed was that I should miss my methotrexate injection on Monday.

[SheffieldJane]

He is missing the point that a long term steroid user cannot utilise emergency cortisol during illness in the way they would if they were healthy. He’s quite right that it is an immunosuppressant that will prevent you fighting off opportune infections, however the stress of not yet having efficient working Adrenal glands can be dangerous too. Worst case scenarios you could precipitate a life threatening adrenal crisis. I don’t begin to understand immunology but my Endocrinologist is very firm that I should observe sick day rules to protect my Adrenal function. I am on 6 mgs so would have thought I might be ok. But no! Will you qualify for anti-virals? Hopefully as you already feel better, you have the milder omicron virus with no lasting ill effects. I hope you get over this quickly. As Heron says the drugs we take like Pred and Tocilizumab are actually used to prevent cytokine storms in Covid. A manifestation to be avoided.

[Dontwannabesick in reply to SheffieldJane]

My thoughts exactly, and I'm just gonna keep taking the tablets. The fact that I was like the walking dead for 2 days, then much much better once I'd had one day on the sick day dose says it all for me.

[PMRpro Ambassador in reply to SheffieldJane]

Even someone at 20mg could be at risk of an adrenal crisis if the precipitating factor was severe or protracted enough - the body needs a spike of cortisol and it can be massively high in certain circumstances, up to 9 times normal in response to a stressful situation. That doesn't persist unless you put yourself into stressful situations again and again or it is ongoing.

[Coffeebeans]

I was sent the sick day rules very recently while waiting synacthen test results.

General illness

On less than 5mg - take 10mg daily

On 5-10mg - double the dose

Covid illness

If you're on less than 20mg instead of one dose take 10mg in the morning and 10mg in the evening.

It does say that only do this if you feel unwell and if it extends over a week seek medical guidance. I'll try and link the document but don't hold your breath.

Get well soon.

[PMRpro Ambassador in reply to Coffeebeans]

It is linked above

[Coffeebeans in reply to PMRpro]

As you can tell I didn't read all the replies 😂

[Coffeebeans]

Link below

leedsth.nhs.uk/assets/b7854...

[Dontwannabesick in reply to Coffeebeans]

Thanks Coffeebeans, these are what I've been following. I have emailed them to my GP.

[Greensleeves]

I was taking 3mg Prednisilone when I caught Covid pre vaccine. Increased to 10mg but started adrenal crisis 5 days later , was fine after IV Dexamethasone . The sick day rules were to increase to 20mg at that time but I didn’t know that. I’d listen to your body and read about symptoms of adrenal crisis. We’re vaccinated now and things have changed . We do need the extra cortisol our immune system is low anyway but needs the extra help. All will be well, just keep checking SATS and doing deep breathing exercises.

[Dontwannabesick in reply to Greensleeves]

Thank you x

[Chemisefalaise]

I’d never heard of the Sick Day rules until about 3 weeks ago despite having been on Pred for GCA since Dec 2019. However an Endocrinologist sent me this link which I found very clear and useful. Hope you do too. endocrinology.org/media/414...

[Dontwannabesick in reply to Chemisefalaise]

Thank you, that's very clear😄