Rapid taper from Prednisolone (corticosteroid) for Crohn's

[monicalewinski]

Hi,

I was diagnosed with active chrohn's in September and have since found out I have a fistula (bowel to bowel) and a stricture.

I was admitted again last week due to a blockage and they discovered that the inflammation had not been tempered by the steroids I was originally put on (can't remember what they were now); I was given intravenous steroids for 3 days then released on 40mg steroid daily.

I am getting a bowel resection in Jan, so I am doing a rapid taper between now and then - 7 days at 40mg, 7 at 30mg, etc etc.

Yesterday I dropped to 30mg and I feel awful today. I am swollen and sweaty, tremors, my heart is beating super hard (and I can really feel it in my chest, neck and back of head), I am dizzy and feel really scared (not scared actually of something, but a scared feeling IYSWIM), I also have no energy at all - a real weak, drained feeling like I've been hit by a truck.

I have googled a bit and it sounds like withdrawal due to the taper, has anyone else experienced this - how long does it last for and is there a point at which I should start to think "this isn't normal taper symptoms, but something I need to act on".

Thanks.

Sorry to hear what you're going through, my brother has has similar with his UC so I know how nasty it can be.

at which I should start to think "this isn't normal taper symptoms, but something I need to act on". - your medical history is so complicated that I don't think any of us can answer that, your symptoms could easily mask a serious infection so I think you'd be perfectly reasonable to call your doctor or 111 for advice.

Thanks Boots, as daft as it sounds I don't feel bad enough to be worried yet, but I hate not feeling in control, which is probably what's causing the scared feeling - it's all very out of body tbh.

I'll maybe phone 111 later. Thanks again!

I have UC and have done several pred tapers but only ever dropping 5mg every 7 days. Even at that pace I feel absolutely awful during the taper - achy, sweaty, really anxious and tearful. Just seem to get used to it then have to drop again! Not sure what you can do. Horrible - you have my sympathies.

Thanks Baha, I feel slightly better now - it was just horrible earlier on.

I've always been v critical of "just how bad am I, do I really need to see a doctor" about being ill normally - this crohn's malarkey has really thrown me as I am rubbish at being sick, it gets right on my nerves!

Oh well, I look forward to getting better as the week goes on then feeling shite again in 6 days - yay!

Thanks again. x

You are tapering quite rapidly. Whenever ive been on pred i usually go down by 5mg every 7 days and then by 1mg every 4 days after I get down to 10mg.

I feel 100 times better today, I think yesterday must have been withdrawal now tbh - I can't wait until next Saturday

I'm rapid taper because they want me off them before my operation in Jan, but they want to get the inflammation down as much as poss prior to that (that's the way I've understood it anyway) - I'm supposed to completely off them by 2nd Jan.

Thanks for replying, at least I know what to expect now and that it is down to the speed of the taper and not something more sinister.

Good luck with the resection. There's a few of us on here with Crohns and have gone through it all. We're here if you need to ask anything.

Thanks gobbin - I'd never even heard of it until a couple of months ago, I'm all googled out now and just waiting! It's been quite a relief to get the label tbh as I was starting to think everything was a figment of my mind.

(Funnily enough, it was not something I was aware of but it turns out that just about everyone knows someone who has it, or UC - who knew?!).

That's true about people saying they know someone with Crohns or UC once you start talking about it, it's very common!