How long for prednisolone to take effect?

[Seasouth]

Hi everyone, I've had colitis for around 8 years at this point.

I've had quite a few flares - one particularly severe one that required hospitalisation.

But I guess each flare is a new beast.

I'm currently nearing 3 months into this flare. It got worse and worse and last check my calprotectin was over 2500.

I eventually got put on prednisolone (40mg 8 week taper). I've been on it before but this time the side effects have been brutal.

I'm 12 days in, severe insomnia, crippling gas etc etc. Am I feeling better? No. But do I feel different - kinda?

Frequency is down (from 8-9 visits per day to 3). But what I pass is still very obviously indicative of things really not being ok

It's been a long ish flare so I expected it could take a while to turn around...

But what is your experience of pred? Have you seen a meaningful improvement in days or weeks before?

I'm concerned that with the taper maybe I should have seen the bulk of the progress by now perhaps?

[012703060610]

In my experience the highest dose should have given you the relief you needed for the flare. Now that you are tapering to a lower dose, you should follow up with your GI doc. Have you ever been treated for SIBO? That seems to creep in a few times a year for me and I need just one round of antibiotics. I am not surprised that you are not sleeping. I was left on 40 mgs for multiple months and didn't realize I was totally sleep deprived. The goal is to get off as soon as possible. Are you on any immunosuppressive therapy? Based on your frequency, I am not surprised it is down as prednisole as it constipates many people.

[Seasouth in reply to 012703060610]

Hi, thanks for the reply - really useful stuff.

I've actually never heard of SIBO - it does seem like that is a possibility, it's certainly worth asking my GI about!

Hmm yeah I suspected the Pred should have done something identifiable by now.

I'm also on Vedolizumab (Entyvio) - which apparently is still in clinical range, I guess this flare just overwhelmed it for now.

I'm sorry you had such a grim experience with the sleep - it's really challenging to navigate the day with pain as it is, all the more so with that strange layer of confusion/fatigue that comes with insomnia.

[LizGibson]

I'm assuming you've taken prednisolone before and it's worked. I had this same issue last year and my GI consultant said my UC had become steroid resistant. I was put on biologics as a result as it's the only options I really have left to manage my symptoms. I would speak to your GI team about it as soon as you can. I've also had the same side effects from steroids in the past so you have my full sympathy. It's really horrible. You should find it gets better now you're tapering.

[Seasouth in reply to LizGibson]

thanks for the reply! I'm sorry you've had such a rough time too.

Yeah I've had a handful of pred courses before. The strongest being a 60mg course about 8 years ago.

I've been on all kinds of biologics before. I'm now resistant to adalimumab, and infliximab unfortunately

Currently on vedolizumab - have been for two years, and it worked great for a while, but it seems this flare overwhelmed it somewhat.

I'm chasing my gi team so hopefully there'll be a new plan soon. They did float the possibility of admission if the pred wasn't effective enough 😬

[LizGibson in reply to Seasouth]

Sorry to hear that. I'm currently on vedolizumab as well having had a bad reaction to infliximab. Hopefully they will have another plan to get things back under control for you. Sounds like you've had a really rough time of it.

[Shoeysmum]

Hi Seasouth

I've only ever been put on a course of pred for my UC when the flare, like yours, went on and on and on... The first day I took the pred the flare stopped! 😮

Being a type 2 diabetic the pred played havoc with my blood sugars plus I think I got all the side effects that are mentioned on the leaflet. There were so many side effects that I had to write them down as I knew I'd forget them when I next saw my consultant. My consultant agreed that I'd be better off on another steroid next time although I don't remember the name of it.

With your daily trips reduced to 3 from 8 or 9, it does sound like the pred is working for you.

Fingers crossed for you 🤞 xx

[Seasouth in reply to Shoeysmum]

yeah my old gi used to fairly openly refer to pred as "nasty but necessary". I'm definitely playing side effect bingo this particular time 🫠

[Howlinwolf999]

I suffered with UC from around 1976 to 2016 and in those 40 odd years I only had prednisolone prescribed around half a dozen times. Each time I had a big flare I was prescribed prednisolone and it usually worked like a magic bullet. First week normally 40mg then on reducing run by 5mg each week over the next weeks. Within a couple of days of starting it had a significant effect and I suffered few side effects, moon face was the most discernible. From going 20+ times a day any reduction was a huge relief. But as with all illnesses and medication it affects different people in different ways. I hope you GI consultant gets you on the right balance of medication to give you a more comfortable outcome.

[Seasouth in reply to Howlinwolf999]

thank you for your reply - it's all really useful context.

Yeah my previous pred experiences have been more immediately effective - this one has been easily the most challenging.

I'm in regular contact with my gi and awaiting their decision regarding whether to stop the pred and jump straight to iv steroids for a few days. Honestly I'm hoping to not have to step up to iv steroids as the last time I did that it took me 3 months to get over it.

[Seasouth]

replying to my own thread as an update here for anyone who might ever find it useful :

So as of today I'm still on Pred. I tapered down to 30mgs (having started at 40mgs) then the nurses decided to hold me there for an additional week before tapering further. It's been 3.5 weeks at this point and I'm now finally seeing a distinct and positive change in my symptoms.

This pred course has taken far longer to yield results than any I've had before - the nurses advised it could be the severity and duration that my flare had been active for.

And though I've still a way to go on this course, and time will tell if I'm able to hold remission, things are trending in the right direction for the first time since February, when this flare first started.

Anyway, I wanted to share because the prevailing wisdom online (even on NHS guidance) is that pred should work within days, or at most a couple weeks, whereas for me it took longer. I've lost much of my summer and been almost entirely housebound for months BUT things are starting to show signs of turning around, so I'm glad I stuck with it.

Hopefully that's of some help to somebody