Steroids

[Inanotherlife]

hello everyone,

I know some of you are knowledgeable on steroids and tapering but any experience on what I think is called an ‘inter current event’???

I was down to 3mg and doing ok but have got another chest infection (3rd one since starting Baracitinib in April) so back on antibiotics.

I understand I need to up the steroids whilst up to 10mg whilst unwell but if that’s only for a week, can I then go back down to 3mg again?

Gp told me ask rheumatologist so left message but it’ll be Monday at least before I hear back.

thanks in advance

[Inanotherlife]

Found it, under ‘Sick day rules’

If you’re well within a week you can go back to usual dose before you became unwell. If more than a week, you have to taper again.

[Deeb1764]

I have to do this regularly I tend to drop from 10mg to a 5mg for a few days as dropping down to 3mg could mean you get dizzy. Its trial and error. I am on Baritcitnib too and chest infections.

[Inanotherlife in reply to Deeb1764]

Ok thanks, will try that.

I’m wondering

[Inanotherlife]

I’m wondering if 3 chest infections in 3 months is too many. I only seem to do 2 weeks of Baricitinib and then I’m ill again!

[MuppetBaby in reply to Inanotherlife]

I had infections for the first 6/7 months of Baricitinib but mine were in the form of abscesses or a UTI. Like you I never had more than a few weeks without having to stop. Now either my body has got used to it or I’m just not noticing so much but I’ve been okay since Aug/Sept last year. I still get abscesses but they don’t affect me systematically like they did (fast heart rate, fever, dizziness) etc so 🤞🏻they will become less for you. Not sure if anyone else has had the same. Hopefully your rheumatology team are looking out for you.

[Inanotherlife in reply to MuppetBaby]

Ah right, that’s interesting, so maybe I’ll get used to them and suffer less infections. I don’t see the consultant for a couple of months so I’ll see where I’m at with things then.

[Deeb1764 in reply to MuppetBaby]

I was the same had a load of chest infections I was off it more than I was on it! Now settled so do get chest infections but not as many.

[Evie3 in reply to Inanotherlife]

I am on Rituximab and unfortunately get chest infections. Last one lasted 6 weeks before under control. Can see them taking me off it 😥.

Good luck

[catcat01 in reply to Evie3]

Have you been on the Rituximab long, how is it working for you and how many courses have you had please. I am due to start it in a couple of weeks and a little nervous as once it’s in your body it’s there for a good while unlike oral medication which you can just stop .

Hope your better soon x

[Evie3 in reply to catcat01]

Hi …since 2019. Was on Infliximab for 7 years, then Etanercept for 6, Humira for 1 which didnt work. They r all scarey but I have gone for quality of life…I was in a wheelchair before. I have been told I can try Atanercept next, if chest infections continue. Rituximab does lower immunity.

[catcat01 in reply to Evie3]

This will be my 3rd biologics , I seem to do ok but after a few months it all seems to go backwards and more joints seem to join in, having said that never been as bad as you needing a wheel chair. Hope they sort something for you going forward .xx

[Evie3 in reply to catcat01]

It is a horrible disease. We all just want to enjoy our lives the best we can. I hope you can find the right medication soon 🤞. Take care

[Inanotherlife in reply to Evie3]

It is and seems to be hardly any publicity (if that’s the right word) about it compared to other Auto immune diseases.

Just glad I found this forum with such caring and knowledgable people x

[catcat01 in reply to Evie3]

Thank you x

[AgedCrone]

You need to check with whoever oversees your steroid dose…..try asking your rheumy nurse.

[Inanotherlife]

I know, I’ve left a message but I don’t know when I’ll hear back…

[Runrig01]

Have you been diagnosed with adrenal insufficiency?, sick day rules are for people with AI generally. I’ve been on steroids for 11yrs, and never adjusted dose for taking antibiotics, till I was diagnosed with secondary adrenal insufficiency. It’s a double edge sword, as increasing your dose will also reduce your immune system, putting you at a higher risk of infection. I would check with your rheumatologist. If you’ve been on steroids for a long time, it is worth getting a morning blood cortisol taken between 8-9am, and check if you are producing cortisol yourself.

[Inanotherlife in reply to Runrig01]

Hi, I’ve never been tested but I was hospitalised NY day with a chest infection and they doubled my dose from 10mg to 20mg for a week. They said it’d boost the effect of the antibiotics. I’ll ask my Rheumatologist about a test when I see them in Sept..

[Wannabeabago in reply to Runrig01]

I’m so going to get one of those tests, thanks. I didn’t know I could get one. I’m weaning down and on 3mg and haven’t had any issues yet but would certainly be interested to know how my body is going.

[Salamanca21]

No that's too big a jump, I'm afraid. The thing is to taper it down gradually, it may take a while but it's worth it. Once off them, I never went back. Stick to your rhematologist's advice. Good luck!

[Wannabeabago in reply to Salamanca21]

Not after just one week, it’s totally fine to go back to your normal dose.

Agreed though, steroids suck and if you can get off them it’s best! I’m down to 3mg and still tapering! Well done you!!

[Wannabeabago]

If you have been stable on 3mg for say at least a couple of months it’s fine to up your dose to 10mg for one week and then drop back to 3mg without issue. I do it every now and then (after advice from my Rheumy) without issue.

[vivgibbs]

I am in remission for RA and told to come off steroids was down to 3 mg came down to fast and had to go back up to 20 then reduce by 5 over 4 months am back down to 3 mg don't feel to bad but pain of osteo can only take paracetamol. When you've been on steroids for so long you have to come down really slowly and listen to your body. Just thought I'd say 🤗

[Angels54]

Hi , I would say know , reduce to 5 mg for week and then 3 mg , check it out 1st , it can make you feel very tired if you drop dose too quick 👍